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
Friday, November 27, 2009
Wednesday, November 25, 2009
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.
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.
Saturday, August 29, 2009
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
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
Saturday, July 25, 2009
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
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
Tuesday, June 23, 2009
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.
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.
Thursday, May 28, 2009
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.
Reece & Nichols Roberts
913-709-7160 (cell)
913-299-1600 (office)
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)
Thursday, May 14, 2009
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
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
Wednesday, May 13, 2009
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
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
Friday, May 8, 2009
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!
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!
Thursday, May 7, 2009
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!
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!
Wednesday, May 6, 2009
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!
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!
Tuesday, May 5, 2009
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.
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.
Monday, May 4, 2009
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.
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.
Sunday, May 3, 2009
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!
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!
Saturday, May 2, 2009
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.
Grace flew home this afternoon and we miss her already. It's great to have Caroline with me a few more days.
Friday, May 1, 2009
"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!
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!
Thursday, April 30, 2009
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.
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.
Wednesday, April 29, 2009
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.
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.
Tuesday, April 28, 2009
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.
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!
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!
Monday, April 27, 2009
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.
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!
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
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
Sunday, April 26, 2009
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!
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!
Tuesday, April 21, 2009
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.
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.
Thursday, April 16, 2009
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.
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.
Monday, April 13, 2009
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.
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.
Friday, April 10, 2009
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.
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.
Thursday, April 9, 2009
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!!
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!!
Wednesday, April 8, 2009
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.
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.
Tuesday, April 7, 2009
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
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
Monday, April 6, 2009
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.
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.
Saturday, April 4, 2009
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.
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.
Sunday, March 29, 2009
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.
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.
Wednesday, March 25, 2009
1st Phase Complete
The Mayo Clinic is one impressive and efficient medical complex. Jayme has had eight appointments over the past 2 days and it all went like clockwork. We are both exhausted, but relieved the first phase is complete. Back to KC tomorrow.
Yesterday Jayme had blood tests, chest x-ray, EKG and PET scan. Today he had a CT scan, more blood drawn, met with a medical doctor and had a very productive meeting with Dr Nichols, the surgeon. And we are impressed. He and his assistant spent more than 1 1/2 hrs with us. He was very thorough explaining the whole process. When all was said and done, it was decided that Jayme will need 2 additional tests (endoscopy and colonoscopy), which will be performed on April 7th. We will meet with Dr Nichols again on April 8th and surgery will be performed Thursday, April 9th. Jayme will most likely be hospitalized about ten days. When I asked Dr Nichols how long the surgery will take, he responded, "as long as it takes to do a good job". I liked that answer. I did find out the surgery will last anywhere from 5-8 hours.
Jayme is progressing daily. He even made a couple of brief phone calls this evening. He is still weak, but trying hard to walk more with me and follow his arm exercise program daily. It is evident that he feels such relief to get these two days behind him.
Just want to pass along that my niece Amanda's surgery was a success and she is doing well. She is looking so forward to a pain-free life and we are so thrilled for her and husband Zach.
Yesterday Jayme had blood tests, chest x-ray, EKG and PET scan. Today he had a CT scan, more blood drawn, met with a medical doctor and had a very productive meeting with Dr Nichols, the surgeon. And we are impressed. He and his assistant spent more than 1 1/2 hrs with us. He was very thorough explaining the whole process. When all was said and done, it was decided that Jayme will need 2 additional tests (endoscopy and colonoscopy), which will be performed on April 7th. We will meet with Dr Nichols again on April 8th and surgery will be performed Thursday, April 9th. Jayme will most likely be hospitalized about ten days. When I asked Dr Nichols how long the surgery will take, he responded, "as long as it takes to do a good job". I liked that answer. I did find out the surgery will last anywhere from 5-8 hours.
Jayme is progressing daily. He even made a couple of brief phone calls this evening. He is still weak, but trying hard to walk more with me and follow his arm exercise program daily. It is evident that he feels such relief to get these two days behind him.
Just want to pass along that my niece Amanda's surgery was a success and she is doing well. She is looking so forward to a pain-free life and we are so thrilled for her and husband Zach.
Monday, March 23, 2009
Road Trip
We made it to Rochester, though about got blown off the road in all four states which we traveled! Jayme tolerated the trip just fine and he is now settled in a luxury bed at the Hampton Inn. The hotel is great and has just been remodeled. This will also be my home for 10-14 days when he has surgery next month.
He has five tests and two appointments with physicians over the next few days. They will re-stage the cancer and we will meet with the surgeon, Dr Nichols, on Wednesday afternoon to discuss the plan for surgery. I'm crossing my fingers that all goes well. I'm just so glad we made it to this point.
The outpouring of support from my family and friends has been quite overwhelming. Thanks to my friends/co-workers at Blessed Trinity for your generosity. It is so appreciated. Believe it or not, I look forward to getting back to work!
I ask again that you send positive thoughts to my niece, Amanda. Her surgery was postponed last week, and she is rescheduled for tomorrow.
He has five tests and two appointments with physicians over the next few days. They will re-stage the cancer and we will meet with the surgeon, Dr Nichols, on Wednesday afternoon to discuss the plan for surgery. I'm crossing my fingers that all goes well. I'm just so glad we made it to this point.
The outpouring of support from my family and friends has been quite overwhelming. Thanks to my friends/co-workers at Blessed Trinity for your generosity. It is so appreciated. Believe it or not, I look forward to getting back to work!
I ask again that you send positive thoughts to my niece, Amanda. Her surgery was postponed last week, and she is rescheduled for tomorrow.
Friday, March 20, 2009
Home Sweet Home
We finally got Jayme home about 2:00 yesterday. We are trying to get on a routine with all that has to be done, but ran into a snag this morning. They were having trouble flushing out his feeding tube in the hospital, but it was still working. As of this morning, we can't get anything to go through. Just spoke to the surgeon and he will replace the tube on an out-patient basis this afternoon. That's the good news. The bad news is he has to have it done during the KU game. Thank goodness for DVR's!
So glad I don't have to walk the halls of Menorah anymore. Did I ever mention that Jayme was in the room next to the one my mom was in for 5 of her 10 weeks last year? At least I knew my way around and was familiar with most of the nurses and techs!
We have Jayme's room set up like Menorah North. He has a hospital bed, walker, wheelchair, IV pole, etc. Home health nursing and physical therapy will start today. He is not able to walk unaided yet, but hopefully will soon.
Sam and Caroline are both here this week and have been great help and support. Before this week, Grace has been the one doing her share, but she is in Playa Del Carmen having a blast on her senior trip.
My fingers are crossed that we can still go to Rochester on Monday.
Rock Chalk!
So glad I don't have to walk the halls of Menorah anymore. Did I ever mention that Jayme was in the room next to the one my mom was in for 5 of her 10 weeks last year? At least I knew my way around and was familiar with most of the nurses and techs!
We have Jayme's room set up like Menorah North. He has a hospital bed, walker, wheelchair, IV pole, etc. Home health nursing and physical therapy will start today. He is not able to walk unaided yet, but hopefully will soon.
Sam and Caroline are both here this week and have been great help and support. Before this week, Grace has been the one doing her share, but she is in Playa Del Carmen having a blast on her senior trip.
My fingers are crossed that we can still go to Rochester on Monday.
Rock Chalk!
Monday, March 16, 2009
Steady Improvement
Jayme had a pretty good start to the week. Not perfect by any means, but far better than the previous seven weeks. He is still in Rm 407 at Menorah, but we hope he is able to come home by Wednesday, and at the latest, Thursday. There are still a few issues to resolve physically, but making progress daily. It also helped that the nephrologist (kidney doc) suggested he get his butt out of bed and move! Jayme took notice.
He walked quite a bit today with the physical therapist and I took him outside in a wheelchair to enjoy such great weather. The change of scenery did wonders for him. And thankfully his confusion is about gone. I would rate him at 85 %. We actually had several conversations today and he even initiated a few of them.
I truly admire Jayme for what he has endured these past several weeks and how he has battled this nasty cancer. Since January 26th, no matter how bad he felt, he got up, got dressed, walked downstairs, got in the car and went to the KC Cancer Center. Then on the final day of treatment, he ends up in the hospital and in ICU that night. In hindsight, he was much sicker than I realized, but was determined to get through the chemo and radiation in a timely manner. And he did.
Not until today did it hit him that he was really done with all the treatments. It was fun for me to experience that feeling with him, just total relief that he won't have to endure the effects of chemo and radiation again. We know surgery won't be a piece of cake, but I can't imagine how it could be worse!
Please pray for our niece, Amanda. She is having her colon surgery tomorrow at the Cleveland Clinic. We all wish well and know this will better her life forever.
He walked quite a bit today with the physical therapist and I took him outside in a wheelchair to enjoy such great weather. The change of scenery did wonders for him. And thankfully his confusion is about gone. I would rate him at 85 %. We actually had several conversations today and he even initiated a few of them.
I truly admire Jayme for what he has endured these past several weeks and how he has battled this nasty cancer. Since January 26th, no matter how bad he felt, he got up, got dressed, walked downstairs, got in the car and went to the KC Cancer Center. Then on the final day of treatment, he ends up in the hospital and in ICU that night. In hindsight, he was much sicker than I realized, but was determined to get through the chemo and radiation in a timely manner. And he did.
Not until today did it hit him that he was really done with all the treatments. It was fun for me to experience that feeling with him, just total relief that he won't have to endure the effects of chemo and radiation again. We know surgery won't be a piece of cake, but I can't imagine how it could be worse!
Please pray for our niece, Amanda. She is having her colon surgery tomorrow at the Cleveland Clinic. We all wish well and know this will better her life forever.
Friday, March 13, 2009
Turning the Corner
Every morning for the past nine days I have walked into Menorah hoping to see a glimpse of the old Jayme. Day after day I would get more disheartened. It's the small things I missed, like the way he said hello, or called me "sugar" or just winked. I never really noticed those things before until he didn't do them anymore. To my delight, he has done all three today. I think he has finally turned the corner. He still has a long way to go, and will be in the hospital until Monday or Tuesday, but the worst is over.
His blood counts are almost normal. He still lacks protein in his blood, but that will come back up with good nutrition. Physical Therapy walked him this morning and that totally exhausted him. But at least he walked. He still sleeps most of the time, but is far less confused when he wakes up. This morning the oncologist asked Jayme if he knew who won the KU game yesterday and he said "KU lost". He then asked him who won the MU game and he said "MU". The oncologist then told him he was on the road to recovery.
He doesn't remember much at all from the previous nine days. That's a blessing. Too bad I remember everything!
Love the phone calls, texts and emails. From everything I have told him, he is overwhemed and humbled.
His blood counts are almost normal. He still lacks protein in his blood, but that will come back up with good nutrition. Physical Therapy walked him this morning and that totally exhausted him. But at least he walked. He still sleeps most of the time, but is far less confused when he wakes up. This morning the oncologist asked Jayme if he knew who won the KU game yesterday and he said "KU lost". He then asked him who won the MU game and he said "MU". The oncologist then told him he was on the road to recovery.
He doesn't remember much at all from the previous nine days. That's a blessing. Too bad I remember everything!
Love the phone calls, texts and emails. From everything I have told him, he is overwhemed and humbled.
Thursday, March 12, 2009
Ups and Downs
Finally out of ICU, but the doctors think he will be in the hospital at least until the first of the week. His blood counts are better but some of his other levels are abnormal. He is retaining fluid, so a chest x-ray was performed today to make sure his lungs are clear. His confusion seems less today, but it still comes and goes. I look forward to the day that his body is working together as one mean machine!
More tomorrow...
More tomorrow...
Tuesday, March 10, 2009
We're Getting There
ICU is still Jayme's home, but hopefully he will change scenery and move to a regular room tomorrow. Things are progressing, just not as quickly as we would like. His blood counts are still low, and he had two transfusions today (platelets and red blood cells). On the other hand, his blood pressure is stable, heart rate is normal and the oxygen is no longer needed. We are most grateful for any baby steps!
His confusion is still present, though less frequent. I don't know whether to laugh or cry when I hear some of the things come out of his mouth. OK, so I mostly laugh. I have kept a journal over the past several days of all the happenings in ICU. I hope one day to share it with Jayme so we can laugh together!
According to the docs, we are still on schedule for our pre-operative appointments at the Mayo Clinic, as long as he continues to progress. I am confident we will stay on track and follow the timetable to head up to Minnesota on March 23rd.
His confusion is still present, though less frequent. I don't know whether to laugh or cry when I hear some of the things come out of his mouth. OK, so I mostly laugh. I have kept a journal over the past several days of all the happenings in ICU. I hope one day to share it with Jayme so we can laugh together!
According to the docs, we are still on schedule for our pre-operative appointments at the Mayo Clinic, as long as he continues to progress. I am confident we will stay on track and follow the timetable to head up to Minnesota on March 23rd.
Sunday, March 8, 2009
A Waiting Game
Jayme is still in ICU. His blood pressure and kidney function is stable, although he despises the catheter! The holdup is still his zero white blood cell count and low platelets. So it is a waiting game. Just waiting for the blood counts to start going up, which, according to the oncologist should be in the next few days.
Jayme is experiencing some confusion. That can happen when stuck in ICU for several days. He can't tell night from day and the days run together. He hasn't been out of the room since he arrived early Thursday morning. He is hooked up to several monitors as well as IV lines and oxygen, so his mobility is bed to chair only a couple times a day.
I'm certain he won't remember most of this experience. at least I hope he doesn't. But I will have lots of interesting stories to tell him while on his road to recovery!
More later...
Jayme is experiencing some confusion. That can happen when stuck in ICU for several days. He can't tell night from day and the days run together. He hasn't been out of the room since he arrived early Thursday morning. He is hooked up to several monitors as well as IV lines and oxygen, so his mobility is bed to chair only a couple times a day.
I'm certain he won't remember most of this experience. at least I hope he doesn't. But I will have lots of interesting stories to tell him while on his road to recovery!
More later...
Friday, March 6, 2009
Quite the Fighter
Jayme has battled this cancer with sheer guts and determination. And never has that been more apparent than this week, at least since Wednesday evening.
He completed his 28th and final radiation treatment on Wednesday, but was very weak and dehydrated. After consulting with his radiologist and oncologist, it was mutually decided to admit him to the hospital in an attempt to resolve some of his debilitating side effects. In hindsight, that turned out to be a pretty good decision, possibly life-saving. Early Thursday morning around 1:00 am Jayme's blood pressure plummeted to a dangerously low level and he was transferred to Intensive Care. After an hour in ICU they were able to stabilize him. When I arrived at 2:30 am he was resting comfortably. Indeed a scary night for all involved.
Since then they have discovered his white blood count had bottomed out and his platelets were low. Their main concern was infection since his immune system was compromised. He has been given fluids, antibiotics, a platelet transfusion, etc. He is provided constant attention by his nurse and his vitals are closely monitored 24/7. He has four specialists on his case and they seem to have a well-coordinated treatment plan in place.
It's been a bit up and down since Wednesday, but I truly believe the worst is behind him. I just spoke to his ICU nurse and he is having a restful evening. I have been with him during the day, but they don't encourage visitors at night. They believe he will be in ICU through the weekend, then moved to a regular room.
I will try to keep the blog updated more often while he is hospitalized.
I love my family and friends. You have provided me with much needed comfort and support, especially these past few days. I thank you all!
He completed his 28th and final radiation treatment on Wednesday, but was very weak and dehydrated. After consulting with his radiologist and oncologist, it was mutually decided to admit him to the hospital in an attempt to resolve some of his debilitating side effects. In hindsight, that turned out to be a pretty good decision, possibly life-saving. Early Thursday morning around 1:00 am Jayme's blood pressure plummeted to a dangerously low level and he was transferred to Intensive Care. After an hour in ICU they were able to stabilize him. When I arrived at 2:30 am he was resting comfortably. Indeed a scary night for all involved.
Since then they have discovered his white blood count had bottomed out and his platelets were low. Their main concern was infection since his immune system was compromised. He has been given fluids, antibiotics, a platelet transfusion, etc. He is provided constant attention by his nurse and his vitals are closely monitored 24/7. He has four specialists on his case and they seem to have a well-coordinated treatment plan in place.
It's been a bit up and down since Wednesday, but I truly believe the worst is behind him. I just spoke to his ICU nurse and he is having a restful evening. I have been with him during the day, but they don't encourage visitors at night. They believe he will be in ICU through the weekend, then moved to a regular room.
I will try to keep the blog updated more often while he is hospitalized.
I love my family and friends. You have provided me with much needed comfort and support, especially these past few days. I thank you all!
Saturday, February 28, 2009
Staying Afloat
I was hoping Jayme would feel up to blogging this weekend, but that probably won't happen. We are doing our best to stay on top of the nausea, but, in turn, it has caused side effects such as dizziness and drowsiness. He is sleeping about 18-20 hours a day. Not such a bad thing when you feel the way he does.
The good news, chemo is over! The bad news, the side effects will linger for two to three weeks. When a patient completes their chemo treatment at the Cancer Center, the nurses make an announcement, blow some whistles and hand out a purple heart certificate. Kinda corny, but kinda nice. Jayme is a thankful recipient of a chemo graduate certificate and glad to have it!
Three more days of radiation and then the healing process begins to prepare him for surgery. We are so grateful that his chemo and radiation have stayed on schedule without major setbacks.
The feeding tube has been a godsend. He is getting all the nutrition he needs and I give him all his meds through the tube. He is able to chew and swallow ice chips, but that is all that passes his lips. He is hooked up to the feeding pump almost 24 hours a day, so it does limit his mobility. But when he feels up to it, we can turn the machine into a portable pump and he can carry it around in a special backpack.
All appointments for the Mayo Clinic in March are set. That facility is unbelievably organized and so patient/user friendly. We head up there March 23rd for two days of appointments, then home again until April 6th. Surgery is scheduled for April 7th.
I know I am repeating myself, so please bear with me. Many heartfelt thanks for all the correspondence regarding Jayme and my mom. And I certainly appreciate the recent help with food, laundry, dryer installation, grocery shopping, and household repairs. I thought with taking a leave from my job, I would have much more time to handle the everyday things... Not! Though, I do anticipate the schedule lightening up soon as he begins to feel better.
For those locals, enjoy the beautiful snowfall today.
The good news, chemo is over! The bad news, the side effects will linger for two to three weeks. When a patient completes their chemo treatment at the Cancer Center, the nurses make an announcement, blow some whistles and hand out a purple heart certificate. Kinda corny, but kinda nice. Jayme is a thankful recipient of a chemo graduate certificate and glad to have it!
Three more days of radiation and then the healing process begins to prepare him for surgery. We are so grateful that his chemo and radiation have stayed on schedule without major setbacks.
The feeding tube has been a godsend. He is getting all the nutrition he needs and I give him all his meds through the tube. He is able to chew and swallow ice chips, but that is all that passes his lips. He is hooked up to the feeding pump almost 24 hours a day, so it does limit his mobility. But when he feels up to it, we can turn the machine into a portable pump and he can carry it around in a special backpack.
All appointments for the Mayo Clinic in March are set. That facility is unbelievably organized and so patient/user friendly. We head up there March 23rd for two days of appointments, then home again until April 6th. Surgery is scheduled for April 7th.
I know I am repeating myself, so please bear with me. Many heartfelt thanks for all the correspondence regarding Jayme and my mom. And I certainly appreciate the recent help with food, laundry, dryer installation, grocery shopping, and household repairs. I thought with taking a leave from my job, I would have much more time to handle the everyday things... Not! Though, I do anticipate the schedule lightening up soon as he begins to feel better.
For those locals, enjoy the beautiful snowfall today.
Monday, February 23, 2009
Winding Down
Only seven more radiation treatments. And, he is in his final week of chemo. Jayme will surely tell you this has been the longest five weeks of his life (maybe mine as well!), but at least there is a little bit of light coming into focus at the end of some tunnel!
Jayme had minor surgery on Friday to place a feeding tube into his small intestine. All went well, though they kept him in the hospital for 2 days. The nursing care was great and necessary since they had control over the morphine injections! His pain is less and mobility is much better since his discharge from the hospital, even though he has to haul around a feeding pump and pole.
He is more conversational today than I have seen him in weeks. I'll take what I can get since he probably won't feel so good after his dose of Cisplatin chemo today. To jog your memories, that is the "grandaddy" of chemo and the side effects last way too long. I speak from experience from his first dose on January 26th. He will again be hooked up to a portable pump of 5FU chemo today as well, which he will carry around over the next 5 days.
I am hopeful that the feeding tube will alleviate Jayme's stress, worrying about getting down enough calories. As of now the pump runs almost 24 hours a day, but that will decrease by the end of the week as his intake increases. He even put on a few pounds over the weekend.
I have taken a leave of absence from my home health job so I can be home most of the time. However, I will be sneaking out and heading to Lawrence for KU's final 2 home games. Rock Chalk.
Jayme had minor surgery on Friday to place a feeding tube into his small intestine. All went well, though they kept him in the hospital for 2 days. The nursing care was great and necessary since they had control over the morphine injections! His pain is less and mobility is much better since his discharge from the hospital, even though he has to haul around a feeding pump and pole.
He is more conversational today than I have seen him in weeks. I'll take what I can get since he probably won't feel so good after his dose of Cisplatin chemo today. To jog your memories, that is the "grandaddy" of chemo and the side effects last way too long. I speak from experience from his first dose on January 26th. He will again be hooked up to a portable pump of 5FU chemo today as well, which he will carry around over the next 5 days.
I am hopeful that the feeding tube will alleviate Jayme's stress, worrying about getting down enough calories. As of now the pump runs almost 24 hours a day, but that will decrease by the end of the week as his intake increases. He even put on a few pounds over the weekend.
I have taken a leave of absence from my home health job so I can be home most of the time. However, I will be sneaking out and heading to Lawrence for KU's final 2 home games. Rock Chalk.
Thursday, February 19, 2009
Long, strange trip
.. what a long, strange trip it's been.
Thank you from the bottom of my heart for your calls, cards, emails, blogs, good wishes, prayers; thanks for all of it and from each one of you. I want you to know I've been equal and fair in not replying or talking to anyone. All I can say in defense is that it is very hard to talk to others. I don't think I've written an email in two weeks. So it goes.
Sometimes I get misty eyed because I feel so fortunate. I'm so grateful. My treatment has been rough and I know there are more hurdles to vault, but I'm so lucky to have such a tremendous support system in place, to have so many around me that love me? I think of others that have to go through this alone and how horrible that must be. I'm grateful for all the wonderful medical personnel that are helping, the great medical insurance, having a job where they want my recovery first, the wife, the children. I am so blessed. I am so grateful for ice water, my constant friend and companion. I guess I'm grateful because I know it could have been worse.
I've spent years trying to be a spiritual person, making deposits into a spiritual account, by praying and meditating daily or trying to be of some service to others without regard for return. I now make massive withdrawals from that account daily and I am here to tell you that that account is endless, and it's endless regardless of how many or what type of deposits you've made. I turned my cancer over to God (Universe, Higher Power, God, whatever term you wish to use; I don't wish to offend any) and He is in charge of how it all will work out. My job is to try and do what I think he would want me to do as best as I can.
Thanks to Anna and Caroline, the two oldest that were here all weekend for being so helpful, and, of course, Grace. The last few days have been about Mama; Kay has had her hands more than full with family logistics. The Roberts are a tremendous family and it is a privilege to be part of that family. I don't know if you heard it, but I think I heard a little bell ring last Thursday, early am. My guess is Mama got her wings. God Bless you Mama and thanks for everything you did for so many of us.
Thank you from the bottom of my heart for your calls, cards, emails, blogs, good wishes, prayers; thanks for all of it and from each one of you. I want you to know I've been equal and fair in not replying or talking to anyone. All I can say in defense is that it is very hard to talk to others. I don't think I've written an email in two weeks. So it goes.
Sometimes I get misty eyed because I feel so fortunate. I'm so grateful. My treatment has been rough and I know there are more hurdles to vault, but I'm so lucky to have such a tremendous support system in place, to have so many around me that love me? I think of others that have to go through this alone and how horrible that must be. I'm grateful for all the wonderful medical personnel that are helping, the great medical insurance, having a job where they want my recovery first, the wife, the children. I am so blessed. I am so grateful for ice water, my constant friend and companion. I guess I'm grateful because I know it could have been worse.
I've spent years trying to be a spiritual person, making deposits into a spiritual account, by praying and meditating daily or trying to be of some service to others without regard for return. I now make massive withdrawals from that account daily and I am here to tell you that that account is endless, and it's endless regardless of how many or what type of deposits you've made. I turned my cancer over to God (Universe, Higher Power, God, whatever term you wish to use; I don't wish to offend any) and He is in charge of how it all will work out. My job is to try and do what I think he would want me to do as best as I can.
Thanks to Anna and Caroline, the two oldest that were here all weekend for being so helpful, and, of course, Grace. The last few days have been about Mama; Kay has had her hands more than full with family logistics. The Roberts are a tremendous family and it is a privilege to be part of that family. I don't know if you heard it, but I think I heard a little bell ring last Thursday, early am. My guess is Mama got her wings. God Bless you Mama and thanks for everything you did for so many of us.
Wednesday, February 18, 2009
Moving Forward
My mom's memorial celebration was wonderful and so special. She would be very pleased. As always, thanks for all the support. It was great to spend time with all our family and friends and reminisce.
On to Jayme. He is feeling much better today. Unfortunately, that may change Monday when his last round of chemo begins. But for now, we'll take what we can get. He spent some time this morning listing foods he hopes to crave when he can ingest food again. As I recall a pear and a whopper were at the top of his list. All a good sign.
He went to the Cancer Center this morning for hydration and radiation. Then we had an appointment with Dr McCroskey, who is performing the surgical procedure to place a feeding tube on Friday. Jayme will spend the night at Menorah following surgery and we will be coached on how to do the feedings.
So far we are still on schedule for an April 7th surgery at the Mayo.
On a final note, please add my niece Amanda to your positive thought list. She is scheduled for colon surgery on March 24th at the Cleveland Clinic. Hopefully by the summer, both Jayme and Amanda will both be healthy and ready for some fishing and partying at the lakehouse!
On to Jayme. He is feeling much better today. Unfortunately, that may change Monday when his last round of chemo begins. But for now, we'll take what we can get. He spent some time this morning listing foods he hopes to crave when he can ingest food again. As I recall a pear and a whopper were at the top of his list. All a good sign.
He went to the Cancer Center this morning for hydration and radiation. Then we had an appointment with Dr McCroskey, who is performing the surgical procedure to place a feeding tube on Friday. Jayme will spend the night at Menorah following surgery and we will be coached on how to do the feedings.
So far we are still on schedule for an April 7th surgery at the Mayo.
On a final note, please add my niece Amanda to your positive thought list. She is scheduled for colon surgery on March 24th at the Cleveland Clinic. Hopefully by the summer, both Jayme and Amanda will both be healthy and ready for some fishing and partying at the lakehouse!
Thursday, February 12, 2009
Sad news
My mom, Jean, passed away early this morning. She died the way she lived with class, dignity and grace. She had been ill for over a year and knew the end was imminent, and ironically seemed to have more control over her life these past few weeks than she had for several months previous. I will deeply miss her but will hopefully take with me her infectious love of life.
Her obituary will be in the Kansas City Star tomorrow and Sunday if you would like to view. For those out-of-towners, I would be glad to email it to you.
Her obituary will be in the Kansas City Star tomorrow and Sunday if you would like to view. For those out-of-towners, I would be glad to email it to you.
Slow but sure
Jayme is "muddling through" his treatments, as coined by the radiologist. He is working hard to get his daily nutrition, but is coming up a little short. So, it's been mutually decided by Jayme and his physicians to have a feeding tube inserted, which is scheduled for February 20th. I mistakenly thought his next chemo treatment was set for Monday, but appears my math is a bit off. His next round of chemo will be the 23rd. On a side note, he is 1/2 through with all his treatments!
I have been an absent wife these past few days, but he seems to be doing OK with encouragement via my cell phone. All the Findlay kids are home as of this evening, so the attention on Jayme will come in force.
Family and friends have always been a vital part of our lives and we hope to pay it forward as all of you have done. My mom lived that life so we will try to carry on the tradition!
I have been an absent wife these past few days, but he seems to be doing OK with encouragement via my cell phone. All the Findlay kids are home as of this evening, so the attention on Jayme will come in force.
Family and friends have always been a vital part of our lives and we hope to pay it forward as all of you have done. My mom lived that life so we will try to carry on the tradition!
Tuesday, February 10, 2009
Climbin' the Mountain
What a challenge this has been, much tougher than we both anticipated. However, we want all of you to know that the phone calls, emails, blog comments, cards, food, and well-wishes have gone a long way to make it somewhat tolerable!
Jayme had a weekend from hell. He couldn't eat and even drinking was a chore. Also, his salivary glands kicked into overdrive, just another annoyance to add to the thrush, throat ulcers and nausea. Even though the chemo was 2 weeks ago, we have been told the side effects continue for awhile. He will have another round, and thank goodness, his last chemo treatment next week. The radiation is daily and the side effects are cumulative, the more he has the worse he will feel. As of now the radiation has resulted in a "sunburn" in his esophagus and some fatigue. Wish I could paint a prettier picture. This is one mean cancer.
On a happier note, yesterday we met with Jayme's new best friend, Brenda, the nurse practitioner. A new battle plan was decided on and we put it into action last night. It takes both of us, but he was able to get down two high calorie/protein drinks over a two hour period. We felt quite good about that.
Also on Monday I spoke to Dr Nichols, the surgeon at the Mayo Clinic. We are scheduled for pre-operative appointments on March 25-26 and surgery will occur on April 7th. He was so gracious and informative. I had called up there to provide demographics about Jayme and was speaking to his secretary. I had a question regarding Jayme's treatment, so Dr Nichols got on the phone and answered all my questions. Now that just doesn't happen. Just confirms our confidence that we are going in the right direction when we head up I-29 to Rochester, Minnesota.
I will scale back my once hectic schedule over the next few months. All of our kids will be home at the end of the week as well as Claire, our 8 month old grandbaby. That will put a smile on all of our faces, even Jayme's!
Jayme had a weekend from hell. He couldn't eat and even drinking was a chore. Also, his salivary glands kicked into overdrive, just another annoyance to add to the thrush, throat ulcers and nausea. Even though the chemo was 2 weeks ago, we have been told the side effects continue for awhile. He will have another round, and thank goodness, his last chemo treatment next week. The radiation is daily and the side effects are cumulative, the more he has the worse he will feel. As of now the radiation has resulted in a "sunburn" in his esophagus and some fatigue. Wish I could paint a prettier picture. This is one mean cancer.
On a happier note, yesterday we met with Jayme's new best friend, Brenda, the nurse practitioner. A new battle plan was decided on and we put it into action last night. It takes both of us, but he was able to get down two high calorie/protein drinks over a two hour period. We felt quite good about that.
Also on Monday I spoke to Dr Nichols, the surgeon at the Mayo Clinic. We are scheduled for pre-operative appointments on March 25-26 and surgery will occur on April 7th. He was so gracious and informative. I had called up there to provide demographics about Jayme and was speaking to his secretary. I had a question regarding Jayme's treatment, so Dr Nichols got on the phone and answered all my questions. Now that just doesn't happen. Just confirms our confidence that we are going in the right direction when we head up I-29 to Rochester, Minnesota.
I will scale back my once hectic schedule over the next few months. All of our kids will be home at the end of the week as well as Claire, our 8 month old grandbaby. That will put a smile on all of our faces, even Jayme's!
Friday, February 6, 2009
The Mental Game
50% of the game is mental, the other half is mental. I drug Kay and the Nurse Practioner through the coals today, trying to get a handle on my sore throat, not being able to eat, and more. Bless the incredible NP, she met my volley with an amazing grace, calm and professionalism. It was a certifiable melt down. Thank you Brenda, you got the job done today. As is with most things you can't really explain, all of a sudden my world changed. It was like the turning over of a lake in spring, a ball reaching its apex and heading the other direction. All of a sudden, I owned my treatment.
Poor wife Kay has been walking through the world the last two weeks with a 190 lbs of dead weight wrapped around her ankle, holding on for dear life. I haven't driven a car or done much of anything, other than make demands on her. Which is OK, I know, but it had reached a breaking point. Not sure what broke, but I'm glad it did. I spent the morning and afternoon at the Cancer Center doing various things and when I got home I got in the car, went to the bank, did some paperwork there, ran an errand; a complete reversal of behavior. Tomorrow Kay is going up to KU for some Sam fraternity things, watch the Hawks play, and have a time that's not about cancer.
Imagine all of this, then put in a backdrop of your mom passing away slowly but surely. OK, I admit it, I married over my head.
Poor wife Kay has been walking through the world the last two weeks with a 190 lbs of dead weight wrapped around her ankle, holding on for dear life. I haven't driven a car or done much of anything, other than make demands on her. Which is OK, I know, but it had reached a breaking point. Not sure what broke, but I'm glad it did. I spent the morning and afternoon at the Cancer Center doing various things and when I got home I got in the car, went to the bank, did some paperwork there, ran an errand; a complete reversal of behavior. Tomorrow Kay is going up to KU for some Sam fraternity things, watch the Hawks play, and have a time that's not about cancer.
Imagine all of this, then put in a backdrop of your mom passing away slowly but surely. OK, I admit it, I married over my head.
Tuesday, February 3, 2009
A Better Week
We are so grateful the first week of chemo is behind Jayme. What a tough start. Yesterday we spent the afternoon at our new home away from home where he received fluids and three IV anti-nausea medications. That helped immensely. Today he is tired and fatigued, but is eating! The nausea remains, but is much less and more manageable. He continues to get radiation daily and will meet with the radiologist tomorrow for a weekly meeting. I am trying to get back to some sort of regular work schedule. Fat chance. But I'm making progress.
I spent some time with my mom this afternoon. She is bedbound and weakening daily, but inquires about all the grandkids and, of course, Jayme. Hospice is wonderful and has been such a comfort to both my parents. She is not experiencing much pain and tells me she is feeling "peaceful". My dad is her strength and I am in total awe as I witness his caregiving skills. He inspires all of us. Please add my mom and dad to your prayers.
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I spent some time with my mom this afternoon. She is bedbound and weakening daily, but inquires about all the grandkids and, of course, Jayme. Hospice is wonderful and has been such a comfort to both my parents. She is not experiencing much pain and tells me she is feeling "peaceful". My dad is her strength and I am in total awe as I witness his caregiving skills. He inspires all of us. Please add my mom and dad to your prayers.
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Saturday, January 31, 2009
News from the dark side of the moon
I figure I ought to report in. Not a fun week but it could be worse. I'm following another blog of a KC man with Esophageal Cancer and he's been in Houston for weeks with post op problems, but he got out of the hospital yesterday and set to go home mid February. Let's say a prayer for Will.
Grace did the treatment center duty yesterday with me. I held her hand for strength. Tell me how that works? I'm the dad and she's holding me up. And it was fine with me. Small blessings that come with stuff like this.
Basically have just been hunkered down for four days. Kay has tried like a warrior to get me to eat but I did very little. I feel better today. Walked a bit just because I know I should, actually because the dog got out of the house so had to go find her. Coincidence? I think not.
I know for some it's hard to leave comments on the blog. Thanks to those of you that have and those that have meant to, both mean a lot. I continue to be in awe of the support. It's like seeing a world that's always been there but not so obvious.
Grace did the treatment center duty yesterday with me. I held her hand for strength. Tell me how that works? I'm the dad and she's holding me up. And it was fine with me. Small blessings that come with stuff like this.
Basically have just been hunkered down for four days. Kay has tried like a warrior to get me to eat but I did very little. I feel better today. Walked a bit just because I know I should, actually because the dog got out of the house so had to go find her. Coincidence? I think not.
I know for some it's hard to leave comments on the blog. Thanks to those of you that have and those that have meant to, both mean a lot. I continue to be in awe of the support. It's like seeing a world that's always been there but not so obvious.
Thursday, January 29, 2009
He's Hangin' In There
It's been a tough week for Jayme, but we hope things will improve after this first week of chemotherapy comes to an end.
On Monday we spent the day at the Cancer Center getting an education about the chemo world. After receiving intravenous anti-nausea medicine and additional fluids, Jayme got the "grandaddy" of chemo, Cisplatin. After that, he was hooked up to a portable infusion pump that will run through tomorrow with his second type of chemo, 5FU. He continues to get radiation at the Cancer Center daily, but at least he doesn't have to sit for hours to get chemo. He now carries a "man bag" around the house which contains the pump and chemo. Much more convenient.
He has experienced nausea and fatigue since Tuesday morning. But, we're hoping those side effects will dissipate over the weekend. He has no appetite and I am having a difficult time talking him into eating. Unfortunately, I am consuming the mashed potatoes he should be eating!
I am currently attending a pre-scheduled training course that runs through Saturday, so my family has been helping Jayme get to his treatments. Grace will get to see part of her dad's new world tomorrow when she takes him for radiation, lab work and the removal of the infusion pump.
FYI- I increased my cell phone minutes, so feel free to call anytime!
On Monday we spent the day at the Cancer Center getting an education about the chemo world. After receiving intravenous anti-nausea medicine and additional fluids, Jayme got the "grandaddy" of chemo, Cisplatin. After that, he was hooked up to a portable infusion pump that will run through tomorrow with his second type of chemo, 5FU. He continues to get radiation at the Cancer Center daily, but at least he doesn't have to sit for hours to get chemo. He now carries a "man bag" around the house which contains the pump and chemo. Much more convenient.
He has experienced nausea and fatigue since Tuesday morning. But, we're hoping those side effects will dissipate over the weekend. He has no appetite and I am having a difficult time talking him into eating. Unfortunately, I am consuming the mashed potatoes he should be eating!
I am currently attending a pre-scheduled training course that runs through Saturday, so my family has been helping Jayme get to his treatments. Grace will get to see part of her dad's new world tomorrow when she takes him for radiation, lab work and the removal of the infusion pump.
FYI- I increased my cell phone minutes, so feel free to call anytime!
Monday, January 26, 2009
Under cover of darkness, left at the front door
I want to send a special shout out to Warren. We got it. We love you.
We can only hope to do something similar some day for another. It meant a lot.
We can only hope to do something similar some day for another. It meant a lot.
There is a tide in the affairs of men
"There is a tide in the affairs of men, Which, taken at the flood, leads on to fortune; Omitted, all the voyage of their life Is bound in shallows and in miseries."
William Shakespeare, Julius Caesar
We have caught the outgoing tide and are on the move. It's great to get going on this portion of the journey.
Kay is napping. I guess it's exhausting taking care of a cancer patient, getting his first radiation and chemo today. We're glad the ship has set sail and is on out on the open water.
The shortest distance between two points is a straight line but life never moves straight. I had to have a chest x-ray this am to see if my Pic line had moved over the weekend. It hadn't, but it delayed the start of everything two hours and we just barely got all the procedures in today. It's fun to win one. So far, so good.
I was told once that people don't care what you know until they know that you care. I felt like my main doc, Myron, listened to my whining this am. He considered my feelings. We're going to end up doing what he says and he had a good, yet unrehearsed answer for my concerns. Extraordinary, I thought.
Thank you, once again, for your prayers and good wishes. As the benefactor, let me tell you, it has made all the difference in the world. Sometimes I've felt carried by them. Keep up the good work!
William Shakespeare, Julius Caesar
We have caught the outgoing tide and are on the move. It's great to get going on this portion of the journey.
Kay is napping. I guess it's exhausting taking care of a cancer patient, getting his first radiation and chemo today. We're glad the ship has set sail and is on out on the open water.
The shortest distance between two points is a straight line but life never moves straight. I had to have a chest x-ray this am to see if my Pic line had moved over the weekend. It hadn't, but it delayed the start of everything two hours and we just barely got all the procedures in today. It's fun to win one. So far, so good.
I was told once that people don't care what you know until they know that you care. I felt like my main doc, Myron, listened to my whining this am. He considered my feelings. We're going to end up doing what he says and he had a good, yet unrehearsed answer for my concerns. Extraordinary, I thought.
Thank you, once again, for your prayers and good wishes. As the benefactor, let me tell you, it has made all the difference in the world. Sometimes I've felt carried by them. Keep up the good work!
Friday, January 23, 2009
Friday Update
Jayme completed his final appointments before treatments start on Monday. He had a pic line placed in his left arm and was also"tatooed" to pinpoint the radiation site on his chest/abdomen. Ready or not, he will start his chemo and radiation Monday morning and he will be there most of the day. I will play the good wife role and hang out with him during chemo.
We have decided to go to the Mayo Clinic for the surgery. I had mentioned in a previous entry that a friend of Dr Baranda's (from KU) is an oncologist at the Mayo clinic and recommended a surgeon up there. We have a good family friend who has family ties at the Mayo and they were able to contact the surgeon, Dr Frank Nichols, and let him know about Jayme. To our total delight, Dr Nichols called Jayme at home this afternoon as he was boarding a plane for a medical conference. He asked Jayme some questions, explained the process and tentative timetable and then said he was very optimistic for Jayme. What an awesome phone call to get on a Friday afternoon.
Jayme has complained to me over the past few years that he was too low on my priority list. He thought he was #17 on my list. I now tell him he's moved up to #1 , so watch out what you wish for!
We have decided to go to the Mayo Clinic for the surgery. I had mentioned in a previous entry that a friend of Dr Baranda's (from KU) is an oncologist at the Mayo clinic and recommended a surgeon up there. We have a good family friend who has family ties at the Mayo and they were able to contact the surgeon, Dr Frank Nichols, and let him know about Jayme. To our total delight, Dr Nichols called Jayme at home this afternoon as he was boarding a plane for a medical conference. He asked Jayme some questions, explained the process and tentative timetable and then said he was very optimistic for Jayme. What an awesome phone call to get on a Friday afternoon.
Jayme has complained to me over the past few years that he was too low on my priority list. He thought he was #17 on my list. I now tell him he's moved up to #1 , so watch out what you wish for!
Wednesday, January 21, 2009
2nd Opinion
Yesterday we saw Dr Baranda, a GI Oncologist at KU Med West. She spent an hour with us and was unbelievably accommodating. She gathered lots of info from Jayme and after processing his story along with all the test results, concluded that this is probably a cancer that started in the stomach and has moved into the esophagus. Jayme has thought that may be a possibility from the beginning. She agreed with the treatment plan that the KC Cancer Center has laid out and thinks it is important to get started asap. Whether the tumor originated in the stomach or esophagus, it is still treated the same.
Dr Baranda also emphasized how important the surgery is and recommended we look at going to the Mayo Clinic in Rochester, MN. She thinks their thoracic surgeons are the best anywhere. While we were in her office, she called another GI Oncologist from the Mayo Clinic and got the name of a surgeon to consider. I will call tomorrow and start the ball rollin'.
So we will spend the next few weeks researching surgeons at both The Mayo Clinic and MD Anderson and then make a decision as to where to travel, which will probably be sometime in April.
Today is my mom's 78th birthday. Several of us gathered at their home tonight for dinner and cake and I know she enjoyed the evening. Although her body has weakened more this past week, her mind, spirit and sense of humor are amazingly as strong as ever. And even in her practically bedbound condition, she makes sure she gets help during the week to make Jayme casseroles and his favorite mashed potatoes so he can maintain his weight. A truly remarkable woman that I dearly love and admire!
Dr Baranda also emphasized how important the surgery is and recommended we look at going to the Mayo Clinic in Rochester, MN. She thinks their thoracic surgeons are the best anywhere. While we were in her office, she called another GI Oncologist from the Mayo Clinic and got the name of a surgeon to consider. I will call tomorrow and start the ball rollin'.
So we will spend the next few weeks researching surgeons at both The Mayo Clinic and MD Anderson and then make a decision as to where to travel, which will probably be sometime in April.
Today is my mom's 78th birthday. Several of us gathered at their home tonight for dinner and cake and I know she enjoyed the evening. Although her body has weakened more this past week, her mind, spirit and sense of humor are amazingly as strong as ever. And even in her practically bedbound condition, she makes sure she gets help during the week to make Jayme casseroles and his favorite mashed potatoes so he can maintain his weight. A truly remarkable woman that I dearly love and admire!
Monday, January 19, 2009
The Journey Has Begun
We spent the day at the KC Cancer Center. It started with lab work, followed by a lengthy informational session with a nurse practitioner. She discussed what Jayme may experience during the treatment phase, nutritional needs, medications, etc. The final appointment of the day was with Dr Coster, the radiologist. We were quite impressed. He was direct, yet compassionate, and very detailed while explaining the ins and outs of the radiation treatment. Jayme had one final test, a CAT scan, to intertwine with the PET scan to pinpoint the exact site for radiation. Dr Costner also had us view the PET scan on the computer. Amazing technology.
We are very comfortable and confident with the KC Cancer Center, though will follow through with a 2nd opinion at KU Med tomorrow.
So, as of today, we have a tentative timetable. Chemo and radiation will begin Monday, Jan 26th. He will only have chemo on days 1-4, but radiation 5 days a week for 5 1/2 weeks or 28 sessions. He will have chemo again on days 29-32. After he completes the 5 1/2 weeks, he will take off 4 weeks to rest and prepare for surgery at MD Anderson, hopefully sometime in April.
Clear as mud?
We are hopeful that things will stay on schedule, but know there could be a few minor bumps in the road.
And, as always, many thanks for the prayers and good wishes.
We are very comfortable and confident with the KC Cancer Center, though will follow through with a 2nd opinion at KU Med tomorrow.
So, as of today, we have a tentative timetable. Chemo and radiation will begin Monday, Jan 26th. He will only have chemo on days 1-4, but radiation 5 days a week for 5 1/2 weeks or 28 sessions. He will have chemo again on days 29-32. After he completes the 5 1/2 weeks, he will take off 4 weeks to rest and prepare for surgery at MD Anderson, hopefully sometime in April.
Clear as mud?
We are hopeful that things will stay on schedule, but know there could be a few minor bumps in the road.
And, as always, many thanks for the prayers and good wishes.
The thing that reveals itself.
A Samurai wrote a book in the 17th century about discipline, called the Book of Five Rings, in which he talks about discovering "the thing that reveals itself" when you pursue a discipline. When you enter a new community, old ways fall away and new sprouts begin to appear. In the 14 days since I was diagnosed with cancer I can see a new person emerging. I have to gain weight instead of trying to lose it; I openly invite others to pray for me now, whereas before I never needed that; I have this new found sense of caring for others that I've never known, solely due to the massive outpouring of love and support sent our way. No matter how long this process lasts, my new self is a cancer survivor, which is a pretty good group of people I've come to find out.
In every discipline there are things that must be done. Disciplines are not passive endeavors. If all you do is read about running marathons, you'll never know what only marathon runners know. It is in the doingness, in the practice and failures and in the sacrifices, that you get to see the thing that reveals itself.
I'm excited about what will be revealed doing what a cancer survivor does. I'm not looking forward to the discomforts but I know there is a pony somewhere in this big pile of manure.
Kay is doing a great job using the blog to communicate what we're doing and I'm so grateful she is willing to do that. Thanks for all your comments. We love 'em and we love all of you .
In every discipline there are things that must be done. Disciplines are not passive endeavors. If all you do is read about running marathons, you'll never know what only marathon runners know. It is in the doingness, in the practice and failures and in the sacrifices, that you get to see the thing that reveals itself.
I'm excited about what will be revealed doing what a cancer survivor does. I'm not looking forward to the discomforts but I know there is a pony somewhere in this big pile of manure.
Kay is doing a great job using the blog to communicate what we're doing and I'm so grateful she is willing to do that. Thanks for all your comments. We love 'em and we love all of you .
Friday, January 16, 2009
More Test Results
Jayme had an endoscopic ultrasound today. A long day it was; arrived at Menorah at 10 am and arrived home around 6 pm. Dr Jaffri, a gastroenterologist, performed the test and gave us a pretty good report. It is a large tumor, located at the base of the esophagus, but mainly in the stomach, and, is the size of a baseball. Yes, I said baseball. Wow. However, it does not appear to be in the lymph nodes around the site, but is deep in the tissue. He biopsied one lymph node and it came back benign. This would classify it as a Stage 2, which we all think is good news.
We liked Dr Jaffri. He performs around 700 of these procedures yearly, in fact did three today. He gave Jayme a good prognosis and thinks going to MD Anderson is our best option for a successful surgery.
Jayme's main focus is to consume enough nutrition daily to maintain his weight. Eating is a very time consuming task since swallowing has become so difficult these past weeks. Lots of pasta and ice cream. No more steak or bread.
On Monday we have four appointments at the KC Cancer Center, one of those with the Radiologist, Dr Coster. We will then have a 2nd opinion with Dr Baranda from KU on Tuesday regarding his treatment. Then a final decision will be made on where he will receive chemo and radiation. Jayme spoke with MD Anderson this week and they said most treatment regimens for this type of cancer are standard. There are also "clinical trials" available at various times and we will explore that option with the KU Med doc.
I know I am repeating myself, but please know that the emails, phone calls and prayers have meant so much to us, more than you know! It's a wave we will keep on riding throughout. And after all, if 155 people on a commercial jetliner can crash land on the Hudson River and all survive, then certainly his cancer can be cured. Jayme concurs.
We liked Dr Jaffri. He performs around 700 of these procedures yearly, in fact did three today. He gave Jayme a good prognosis and thinks going to MD Anderson is our best option for a successful surgery.
Jayme's main focus is to consume enough nutrition daily to maintain his weight. Eating is a very time consuming task since swallowing has become so difficult these past weeks. Lots of pasta and ice cream. No more steak or bread.
On Monday we have four appointments at the KC Cancer Center, one of those with the Radiologist, Dr Coster. We will then have a 2nd opinion with Dr Baranda from KU on Tuesday regarding his treatment. Then a final decision will be made on where he will receive chemo and radiation. Jayme spoke with MD Anderson this week and they said most treatment regimens for this type of cancer are standard. There are also "clinical trials" available at various times and we will explore that option with the KU Med doc.
I know I am repeating myself, but please know that the emails, phone calls and prayers have meant so much to us, more than you know! It's a wave we will keep on riding throughout. And after all, if 155 people on a commercial jetliner can crash land on the Hudson River and all survive, then certainly his cancer can be cured. Jayme concurs.
Wednesday, January 14, 2009
Good Report!
Jayme had a PET scan this morning, then we met with Dr Myron, the oncologist to discuss the results. Never did I think that hearing the words "chemo" and "radiation" would make me feel better, but in this case, they did. The cancer is "treatable for a cure." Those were Dr Myron's words. Relief does not begin to describe our feelings.
The tumor which is located at the juncture of the esophagus and stomach is very active, but localized. The PET scan showed it has not traveled beyond that area, and with chemo, radiation and subsequent surgery, this thing can be eradicated. Jayme will have an endoscopy ultrasound on Friday to see how deep into the tissue and muscle it has gone, but at least now we know he has a shot. That's all we wanted, a chance to beat this thing.
He will have a second opinion next week as far as treatment, but it appears he will have five weeks of radiation and chemo, then off for four weeks, followed by surgery to resect the esophagus/stomach. The plan is to have the surgery at MD Anderson Cancer Center in Houston.
Many, many heartfelt thanks for all the emails, phone calls, prayers, positive thoughts, etc. We both know it has helped and will continue to help us fight this disease. We know the next several months will be rough, but we are up for the challenge and ready to fight this together.
Love to all our family and friends. You have made such a difference in our lives.
The tumor which is located at the juncture of the esophagus and stomach is very active, but localized. The PET scan showed it has not traveled beyond that area, and with chemo, radiation and subsequent surgery, this thing can be eradicated. Jayme will have an endoscopy ultrasound on Friday to see how deep into the tissue and muscle it has gone, but at least now we know he has a shot. That's all we wanted, a chance to beat this thing.
He will have a second opinion next week as far as treatment, but it appears he will have five weeks of radiation and chemo, then off for four weeks, followed by surgery to resect the esophagus/stomach. The plan is to have the surgery at MD Anderson Cancer Center in Houston.
Many, many heartfelt thanks for all the emails, phone calls, prayers, positive thoughts, etc. We both know it has helped and will continue to help us fight this disease. We know the next several months will be rough, but we are up for the challenge and ready to fight this together.
Love to all our family and friends. You have made such a difference in our lives.
Monday, January 12, 2009
Entry 3, Jan 12
A longtime friend of Jayme's wrote a comment in response to the Jan 10th entry and I want to share it with everyone who follows this blog.
I'm an ordinary man. I've known Jayme since we were children. I think it is one of the great privileges of my life to know this unique man. In another culture, in another time, Jayme might have been a witch doctor or a warrior. A priest or a heretic. A nobleman or an anarchist. A scientist or a jester. But never ordinary.
I know Jayme believes that each of us can help him defeat this vicious animal. So look into your soul and decide how best you can affect the universe. Light a candle, hold a ceremony, shout from the rooftops, burn some incense, pray in earnest, chant at midnight, write a poem, sacrifice a virgin.
Please observe local statutes.
You know the wish to make when you blow out the candles on your next birthday, or when you break a wishbone, or when you see a falling star. And I don't mean the one about getting a pony.
And when Jayme wins this battle, we can take the credit!
I'm an ordinary man. I've known Jayme since we were children. I think it is one of the great privileges of my life to know this unique man. In another culture, in another time, Jayme might have been a witch doctor or a warrior. A priest or a heretic. A nobleman or an anarchist. A scientist or a jester. But never ordinary.
I know Jayme believes that each of us can help him defeat this vicious animal. So look into your soul and decide how best you can affect the universe. Light a candle, hold a ceremony, shout from the rooftops, burn some incense, pray in earnest, chant at midnight, write a poem, sacrifice a virgin.
Please observe local statutes.
You know the wish to make when you blow out the candles on your next birthday, or when you break a wishbone, or when you see a falling star. And I don't mean the one about getting a pony.
And when Jayme wins this battle, we can take the credit!
Saturday, January 10, 2009
At the lake for a little R&R
For those of you who don't know who "Mama" is, that would be my mom. She has courageously battled cancer for over a year, but it has been determined that it is no longer treatable. Hospice is now a part of our lives and that is a good thing. They will provide so much comfort to both my parents.
Jayme and I are relaxing at the lake this weekend. Not exactly fishing weather , but still our favorite place to spend a weekend, no matter the weather.
Thanks to all our friends and family for the emails and phone calls and outpouring of support. As difficult as it has been these past 5 days since we received the phone call, it has made such a difference. You have no idea how grateful we are for your positive thoughts and prayers!
Jayme will have two tests next week to "stage" the cancer. The results of those tests will determine the treatment options. Hopefully, he can start treatments in the next 10 days. Whatever the results, at least we will know what we face. Not knowing is the difficult part. Jayme has been remarkable and focusing on readying his body for what is ahead.
Please keep those positive vibes coming his way.
Jayme and I are relaxing at the lake this weekend. Not exactly fishing weather , but still our favorite place to spend a weekend, no matter the weather.
Thanks to all our friends and family for the emails and phone calls and outpouring of support. As difficult as it has been these past 5 days since we received the phone call, it has made such a difference. You have no idea how grateful we are for your positive thoughts and prayers!
Jayme will have two tests next week to "stage" the cancer. The results of those tests will determine the treatment options. Hopefully, he can start treatments in the next 10 days. Whatever the results, at least we will know what we face. Not knowing is the difficult part. Jayme has been remarkable and focusing on readying his body for what is ahead.
Please keep those positive vibes coming his way.
Friday, January 9, 2009
Entry 1
I was diagnosed with Esophageal Cancer on Monday, Jan. 5. Kay suggested we do a blog otherwise she'll run thru her monthly cell phone minutes in about three days.
First, there has been an incredible outpouring of support. It sounds cliche but it really, truly, is a great thing. To go through this alone would be much more difficult. So, it's a We process.
Met the main doctor, Dr. Myron of the Kansas City Cancer Center, on Wed. He's solid. We're good there. He ordered three tests, which will take 10 days to complete. My appointment was at 1:15 pm and I got there just as Kay came out of Dr Myron's office with Mama, who has been battling cancer over a year. We all love Mama so much. She was clear and straight to the point when she said her cancer is untreatable. Her parting words to Dr. Myron were "take care of my son-in-law". She is always thinking of others. A great inspiration. We'll make postings about Mama to let you know her status (she'll probably insist on making her own, knowing her!).
First, there has been an incredible outpouring of support. It sounds cliche but it really, truly, is a great thing. To go through this alone would be much more difficult. So, it's a We process.
Met the main doctor, Dr. Myron of the Kansas City Cancer Center, on Wed. He's solid. We're good there. He ordered three tests, which will take 10 days to complete. My appointment was at 1:15 pm and I got there just as Kay came out of Dr Myron's office with Mama, who has been battling cancer over a year. We all love Mama so much. She was clear and straight to the point when she said her cancer is untreatable. Her parting words to Dr. Myron were "take care of my son-in-law". She is always thinking of others. A great inspiration. We'll make postings about Mama to let you know her status (she'll probably insist on making her own, knowing her!).
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