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.

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.

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.

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!

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.

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.

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...

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.

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...

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!