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Friday, June 20, 2008
Cassie and Cricket
Margo and Simon
I have been remiss in getting some a photo of Margo and Simon on the blog. They have been mentioned repeatedly but many of you have never seen them. Margo (the cocker spaniel) is named for the Bette Davis character Margo Channing from "All About Eve". We sometimes think Miss Davis' imperious temperament may be in Margo. Simon (the beagle) is named that just because we liked the name. They are both four years old with Margo being just a few months older.
Like most brothers and sisters, they both love and torture each other at times.
They both provide such joy in our lives even when Margo won't go out in the rain or when Simon decides to do a beagle bark much too early in the morning. (Click on any of the pictures for a larger version.)
Like most brothers and sisters, they both love and torture each other at times.
They both provide such joy in our lives even when Margo won't go out in the rain or when Simon decides to do a beagle bark much too early in the morning. (Click on any of the pictures for a larger version.)
Thursday, June 19, 2008
Care planning meeting
Rick and I attended my care plan/discharge meeting today. At this meeting all those involved in your care discuss progress or issues. The social worker is there, the nurse is there, and of course the therapist. They indicated that they feel that there is still opportunity for improvement, that they have seen definite progress and that they feel that I am putting forth appropriate effort.
With the insurance company approving continued rehab on a weekly basis it’s always possible that I could actually have 48 hours notice that it will be time to go home. To that end, we have scheduled a home assessment for next week assuming we’re able to get a ramp constructed in time. This visit would entail Rick picking me up in our car and going over to the house. Rehab center staff would be with us and they would asses the appropriateness of the house layout.
Rick and I had the opportunity at the care planning meeting to ask any questions that we had and the staff was able to provide all the answers that we needed.
With the insurance company approving continued rehab on a weekly basis it’s always possible that I could actually have 48 hours notice that it will be time to go home. To that end, we have scheduled a home assessment for next week assuming we’re able to get a ramp constructed in time. This visit would entail Rick picking me up in our car and going over to the house. Rehab center staff would be with us and they would asses the appropriateness of the house layout.
Rick and I had the opportunity at the care planning meeting to ask any questions that we had and the staff was able to provide all the answers that we needed.
Physical therapy update
In physical therapy today we did some standing in the parallel bars. The first time I was able to stand for one minute and forty-two seconds, and the second time for a minute and fifty seconds. The intent is to get the legs used to bearing weight and to not use the arms too much to support yourself.
For my weight exercises I was able to move up from 2 lb to 3 lb weights. I know that doesn’t sound like much but they seem pleased with progress.
The therapists feel that my upper body strength is improving but combining the therapy does make for an exhausting afternoon.
For my weight exercises I was able to move up from 2 lb to 3 lb weights. I know that doesn’t sound like much but they seem pleased with progress.
The therapists feel that my upper body strength is improving but combining the therapy does make for an exhausting afternoon.
On the street where we live
While Jim was visiting this weekend he took pictures of the house, the gardens and our general neighborhood. Jacksonville is a beautiful city to live in and Rick and I are fortunate to live in a historic district called Avondale. The neighborhood is architecturally diverse, dating to the 1920s. After having lived in a building across the street from the first railroad terminus in the country in Ellicott City, Maryland - a town dating back to the late 1700’s - a house built in 1924 that is considered historic kind of amuses me. Our particular home is an American style bungalow that Rick originally purchased for the wrap-around porch and the enormous live oak in the back yard. It took me a number of years to translate northern gardening to Florida gardening but both Grandmother and Mom instilled a love of flowers and gardening in me. Each year as I plant our gardens I think of theirs. A few photos follow of the house with some focus on the gardens. The hydrangea on the corner is over twenty-five years old.
There have been times when I went crazy planting the front gardens – one year planting 450 four-inch impatiens in an intricate pattern. While beautiful, I will never do that again. This year I planted borders of red and purple miniature pentas, multiple shades of geraniums with spreading pentas behind them.
(Note: Click any of the following photos for a larger view.)
Here are some photos that show our back yard.
Around the corner from our house are the shoppes of Avondale. The shoppes include six different restaurants including one of our favorites, the Fox, which is just an old-fashioned diner with wonderful food. If you’re not there in time on the weekends you’ll be in a line of 15-20 people waiting to get in.
Another is The Brick which has the closest to Maryland crab cakes that I have found in Jacksonville. The remaining shoppes are a mix that appeal to the ladies who lunch or those looking or something unique from a local specialty shop.
The St. John’s River is a few blocks from our home but and many of the streets have direct access to it. These shots were taken from Edgewood Avenue which is a gracious larger cross street with a park-like median. At the river’s edge you are able to see downtown Jacksonville.
Over the recent years downtown has experienced a bit of revitalization with a number of condo and apartment towers being built and a few shots of downtown are included. All of this is just to give you a sense of where we live.
There have been times when I went crazy planting the front gardens – one year planting 450 four-inch impatiens in an intricate pattern. While beautiful, I will never do that again. This year I planted borders of red and purple miniature pentas, multiple shades of geraniums with spreading pentas behind them.
(Note: Click any of the following photos for a larger view.)
Here are some photos that show our back yard.
Around the corner from our house are the shoppes of Avondale. The shoppes include six different restaurants including one of our favorites, the Fox, which is just an old-fashioned diner with wonderful food. If you’re not there in time on the weekends you’ll be in a line of 15-20 people waiting to get in.
Another is The Brick which has the closest to Maryland crab cakes that I have found in Jacksonville. The remaining shoppes are a mix that appeal to the ladies who lunch or those looking or something unique from a local specialty shop.
The St. John’s River is a few blocks from our home but and many of the streets have direct access to it. These shots were taken from Edgewood Avenue which is a gracious larger cross street with a park-like median. At the river’s edge you are able to see downtown Jacksonville.
Over the recent years downtown has experienced a bit of revitalization with a number of condo and apartment towers being built and a few shots of downtown are included. All of this is just to give you a sense of where we live.
Mom and Chris update
I just received a call a little while ago that my mother and sister Chris did make it safely home from their motor home trip to visit me.
Canine visitation
I may be setting a record for canine visitors. So far I've had Margo and Simon (our cocker and beagle), Toostie and Cleo (Wendy's goldens), Spurrier (Michelle's pug). Cassie and Cricket (my sister Chris' Shelties) and now Chin and Bruder (Chuck and Ron's Shih Tzu and standard Schnauzer). Nine canines so far and counting. I know a few more will be here soon for a visit also. All have been well behaved and certainly have brightened my days. WOOF!!!!
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A message from Rick
Barry is correct. We will make the most of each day. A wheelchair ramp is being planned for easy access to the house. It will be built in the back garden area. We think that is an appropriate location so Barry can enjoy the garden as he enters and exits the house. Also, it will provide him the opportunity to make certain I am keeping the garden in shape!
I had a nice visit with Barry's mom and sister Chris. I understand where Barry gets his strength and courage. I am so proud of Barry's determination to gain as much mobility and independence as possible. He takes his PT seriously and I know he will reach his maximum medical improvement soon.
Each one of you has been a Godsend with your prayers and good wishes. Barry is truly blessed to have you in his life.
Rick
I had a nice visit with Barry's mom and sister Chris. I understand where Barry gets his strength and courage. I am so proud of Barry's determination to gain as much mobility and independence as possible. He takes his PT seriously and I know he will reach his maximum medical improvement soon.
Each one of you has been a Godsend with your prayers and good wishes. Barry is truly blessed to have you in his life.
Rick
Mom and Chris
Mom and my sister Chris will start their trip back to Baltimore tomorrow. Chris has two Shelties, Cassie and Cricket. I think they have visited everyone in the rehab center and on several instances requests for visits for particular rooms were conveyed.
Margo and Simon have not been around lots of other dogs, so it was a great surprise (and relief) when all four played together beautifully. Whew
Wednesday, June 18, 2008
Appointment with the oncologist
I did have my appointment with the oncologist this morning despite being stopped by CSX freight trains twice on the way. I had a stop in the lab first for blood work where every reading was perfect. Typically when I go to a physician’s office I have a really bad case of white coat syndrome and my blood pressure is usually elevated. When I take it at home, it’s fine. When the physician’s assistant took my blood pressure today it was 110/70 so I was in a relatively calm state of mind.
My oncologist is the regional melanoma specialist and we’ve always had a very open, honest and frank relationship. As Dr. Guthrie examined me he determined that there had been some shrinking of the lymph nodes that had originally been of concern. The four day chemotherapy regimen that I followed earlier appears to have had some positive effect. My oncologist does feel, given the other circumstances that I’m dealing with - the rehab, that continuing the chemotherapy regimen is the most appropriate option for me and I concur.
When I first was diagnosed with metastatic melanoma in 2006 I knew there was a possibility that it could recur and that I would not experience a normal life span. That does now appear to be more of a likelihood. Cures for melanoma that have entered other body systems are rare. The fact that the chemotherapy will be of some benefit does not mean that it is likely to be a cure.
During the appointment Rick was with me as well as a co-worker of Rick’s, Dr. Reuben Brigety. Reuben has been an excellent resource to us, helping us with questions. At the conclusion of the exam I did ask Dr. Guthrie, if the Temodar continues to be successful, what time frame am I likely looking at. His straightforward answer was nine to twelve months.
After the appointment as I was waiting for the transport van to take me back to the rehab center, Rick and I were sitting in the lobby of the medical building for about twenty minutes. I am not on this journey alone. Rick is being as strong for me as I am attempting to be strong for him.
Let me be clear, this does not mean that Barry is giving up. This does not mean that Barry is going to stop fighting this. What it does mean is that Barry needs to understand the parameters that now surround his life.
I continue to draw incredible strength from all the emails, phone calls, blog comments, and cards. Those of you that know me well, particularly in the Supply Chain office, know that in the True Colors personality profile I am high green (very data driven) and dealing with this in a green fashion is the only way that makes sense to me.
While this is certainly not the news I had hoped to receive, it is the news I expected to receive. My sense of humor is still intact. My zest and joy for life is here and not going anywhere. Each day is going to be lived to the fullest.
There certainly have been positive elements to this journey. I have had the opportunity to truly discover how many lives I have touched even when I was not aware of it. I have developed an inner peace that I didn’t realize was possible. I also always feel as if I am surrounded by the thoughts and prayers of all of you that are part of this journey with me.
My oncologist is the regional melanoma specialist and we’ve always had a very open, honest and frank relationship. As Dr. Guthrie examined me he determined that there had been some shrinking of the lymph nodes that had originally been of concern. The four day chemotherapy regimen that I followed earlier appears to have had some positive effect. My oncologist does feel, given the other circumstances that I’m dealing with - the rehab, that continuing the chemotherapy regimen is the most appropriate option for me and I concur.
When I first was diagnosed with metastatic melanoma in 2006 I knew there was a possibility that it could recur and that I would not experience a normal life span. That does now appear to be more of a likelihood. Cures for melanoma that have entered other body systems are rare. The fact that the chemotherapy will be of some benefit does not mean that it is likely to be a cure.
During the appointment Rick was with me as well as a co-worker of Rick’s, Dr. Reuben Brigety. Reuben has been an excellent resource to us, helping us with questions. At the conclusion of the exam I did ask Dr. Guthrie, if the Temodar continues to be successful, what time frame am I likely looking at. His straightforward answer was nine to twelve months.
After the appointment as I was waiting for the transport van to take me back to the rehab center, Rick and I were sitting in the lobby of the medical building for about twenty minutes. I am not on this journey alone. Rick is being as strong for me as I am attempting to be strong for him.
Let me be clear, this does not mean that Barry is giving up. This does not mean that Barry is going to stop fighting this. What it does mean is that Barry needs to understand the parameters that now surround his life.
I continue to draw incredible strength from all the emails, phone calls, blog comments, and cards. Those of you that know me well, particularly in the Supply Chain office, know that in the True Colors personality profile I am high green (very data driven) and dealing with this in a green fashion is the only way that makes sense to me.
While this is certainly not the news I had hoped to receive, it is the news I expected to receive. My sense of humor is still intact. My zest and joy for life is here and not going anywhere. Each day is going to be lived to the fullest.
There certainly have been positive elements to this journey. I have had the opportunity to truly discover how many lives I have touched even when I was not aware of it. I have developed an inner peace that I didn’t realize was possible. I also always feel as if I am surrounded by the thoughts and prayers of all of you that are part of this journey with me.
Physical therapy update
I have now been assigned to different physical therapists, Manny and Rachel. My occupational and physical therapy will be combined into an afternoon session. So now I have the luxury of staying in bed until lunch if I choose.
Today I did some standing with the parallel bars. Both Manny and Rachel are Filipino. It’s unusual for me to be called tall but both of them said, “How tall are you?” I said, “I’m five ten and a half. I’m not that tall.” But they said, “You’re taller than we are.”
One of the exercises was doing sit-ups. I had to laugh because I could never do sit-ups when I was healthy. These were modified sit-ups with cushions under the back to try to strengthen the abdominal muscles. I did some additional leg exercises, too, and my therapy session this afternoon was probably about three hours.
Today I did some standing with the parallel bars. Both Manny and Rachel are Filipino. It’s unusual for me to be called tall but both of them said, “How tall are you?” I said, “I’m five ten and a half. I’m not that tall.” But they said, “You’re taller than we are.”
One of the exercises was doing sit-ups. I had to laugh because I could never do sit-ups when I was healthy. These were modified sit-ups with cushions under the back to try to strengthen the abdominal muscles. I did some additional leg exercises, too, and my therapy session this afternoon was probably about three hours.
Tuesday, June 17, 2008
Therapy today
I had three therapy sessions today and am more tired today than usual. What was added today was something called the standing table. This device is designed to cause you to stand without you having to exert your own effort. It’s almost like a mini-elevator. The focus is to get your legs used to being in a standing position again. So they roll my chair up to it, literally put a winch under my butt, lift me to a standing position, and I hold onto the table top. I did this for two different five-minute sessions. Even though I didn’t think I was exerting effort, it did in fact tire my legs.
Mom and Chris today
Each time Chris enters the facility with her shelties Cassie and Cricket she has met with requests to go to specific rooms. These are two very well behaved dogs. They did have the opportunity today to meet and play with Margo and Simon. Margo is always cautious meeting new dogs. Rick was very surprised that all four dogs got along famously playing well together in the back yard.
Mom and Chris spent a comfortable evening in Chris’s motor home and visited me this evening. We had a great time telling old stories and I’ll see them again tomorrow evening. Not sure what specific plans they have for the day tomorrow.
Mom and Chris spent a comfortable evening in Chris’s motor home and visited me this evening. We had a great time telling old stories and I’ll see them again tomorrow evening. Not sure what specific plans they have for the day tomorrow.
Aunt Naomi as Mae West
I had mentioned in an earlier post that Aunt Naomi had sent a picture of herself as Mae West. I thought it would be interesting for eveyone to include a copy of it here. Click the image for a larger version.
I love New York
I’ve always had a bit of a love affair with New York City, and I’ll get into a lot more detail about trips to New York Rick and I have taken over the years.
My initial trip to New York was when I was still in high school in 1975. A friend of Tracy and mine, Joe, had family in New York, his grandmother and his aunt. Joe invited Tracey and me to accompany him on the train to New York for the weekend. Mom and Dad said “Yes,” and I was ecstatic. When we arrived in New York, Joe took us all over the city by subway. We went to the Bronx Zoo, we saw all the major sights, but the thing I remember the most was seeing my first Broadway Show. It was at the Palace Theatre. It was called “Goodtime Charlie” and starred Joel Gray and Carol Reinking in her Broadway debut as Joan of Arc.
As we were standing in the theater lobby, I remember looking around and, much to our surprise, we see “the other Mrs. Jones.” In our high school, the mother of one of our friends, Cathy Jones, worked there, but there was also another Mrs. Jones who worked in the office. So it was a bit of a surprise in the middle of a crowded theater to find someone that we knew. After seeing that show, I was hooked.
I visited New York many other times for sightseeing. Once in college, my art history class went to New York for the day. We of course went to all of the museums and several of us decided to stop in a restaurant for dinner before heading back on the bus. After we were seated and saw the prices on the menu, we had to discreetly stand up and leave the restaurant. After all, we were all on college students’ budget. We ended up eating, much to my chagrin, at Tad’s Steakhouse. Any of you who have ever been to New York know that it probably would have been better if we had gone to McDonald’s.
Years later, another friend of ours, Kas, worked for NBC News. I was working at our hospital in Bridgeport, Connecticut. Kas and I arranged an evening on the town. We got tickets to “Gypsy” with Tyne Daily the night before she received the Tony Award in 1990. We had dinner at a Manhattan restaurant, and then went to the Carlisle Hotel to hear Bobby Short. It was the quintessentially perfect New York evening.
Subequently, Rick and I have been to New York many, many times, but those stories will be saved for another entry.
My initial trip to New York was when I was still in high school in 1975. A friend of Tracy and mine, Joe, had family in New York, his grandmother and his aunt. Joe invited Tracey and me to accompany him on the train to New York for the weekend. Mom and Dad said “Yes,” and I was ecstatic. When we arrived in New York, Joe took us all over the city by subway. We went to the Bronx Zoo, we saw all the major sights, but the thing I remember the most was seeing my first Broadway Show. It was at the Palace Theatre. It was called “Goodtime Charlie” and starred Joel Gray and Carol Reinking in her Broadway debut as Joan of Arc.
As we were standing in the theater lobby, I remember looking around and, much to our surprise, we see “the other Mrs. Jones.” In our high school, the mother of one of our friends, Cathy Jones, worked there, but there was also another Mrs. Jones who worked in the office. So it was a bit of a surprise in the middle of a crowded theater to find someone that we knew. After seeing that show, I was hooked.
I visited New York many other times for sightseeing. Once in college, my art history class went to New York for the day. We of course went to all of the museums and several of us decided to stop in a restaurant for dinner before heading back on the bus. After we were seated and saw the prices on the menu, we had to discreetly stand up and leave the restaurant. After all, we were all on college students’ budget. We ended up eating, much to my chagrin, at Tad’s Steakhouse. Any of you who have ever been to New York know that it probably would have been better if we had gone to McDonald’s.
Years later, another friend of ours, Kas, worked for NBC News. I was working at our hospital in Bridgeport, Connecticut. Kas and I arranged an evening on the town. We got tickets to “Gypsy” with Tyne Daily the night before she received the Tony Award in 1990. We had dinner at a Manhattan restaurant, and then went to the Carlisle Hotel to hear Bobby Short. It was the quintessentially perfect New York evening.
Subequently, Rick and I have been to New York many, many times, but those stories will be saved for another entry.
Monday, June 16, 2008
We now interrupt the regularly scheduled blog entry...
As I was talking to Jim this evening dictating tonight’s blog entry I happened to notice a dog leash coming in the door. It was low to the ground and I’m thinking, “Who in the world is bringing a dog into my room at 8:30 at night?” Well it turns out my mother and my sister drove from Baltimore this morning in my sister’s new motor home to surprise me with a visit. I had no clue they were even thinking about coming down. Mom had told me she was going to be in West Virginia for a couple of days at their cabin. The two dogs are my sister Chris’s shelties that she often takes to nursing facilities as therapy dogs. It was wonderful to see both Mom and Chris. We had a nice visit for about an hour and they’ll be here for several days.
Just in case anyone is wondering, members of my family do actually drive regular vehicles since so far we’ve had a visit from a motorcycle and a motor home.
Sorry tonight’s entry is so short, but Jim and I will pick up with my original plan tomorrow.
Just in case anyone is wondering, members of my family do actually drive regular vehicles since so far we’ve had a visit from a motorcycle and a motor home.
Sorry tonight’s entry is so short, but Jim and I will pick up with my original plan tomorrow.
Physical therapy and upcoming appointments
Physical therapy
This morning in the continuation of upper body exercises a new twist was when Deb indicated we were going to the parallel bars. I was a little confused because morning is more occupational therapy and afternoon is physical therapy concentrating on legs. What we ended up doing was practicing standing. I was able to push myself out of the chair and transfer my hands to the parallel bars which were a little higher. On the first attempt I was able to stand for 40 seconds. On the second attempt I was able to stand for 60 seconds. My right leg continues to lag behind the left. Locking the knee in place is part of the difficulty.
In afternoon therapy, I continued practicing transfers with and without a sliding board (a board that serves as a bridge from one surface to another. You slide your body from bed to chair, chair to bed). Non sliding board transfers involve standing pivoting and sitting. I also used the Omnicycle again. The right leg which I am concentrating on with the bike went from 16% effort to 22% effort so I am continuing to see some incremental improvement in the right leg.
Important appointments and meetings this week
I do have a doctor appointment on Wednesday with my oncologist. It is anticipated that we will be discussing treatment plans for the melanoma and details of the most recent PET scan. On Thursday, Rick and I will be meeting with the rehab center staff to get an overall evaluation of progress since my arrival. They call it a discharge planning meeting which of course concerned me at first until we realized exactly what the meeting entails.
Results of both the oncology appointment and the planning meeting will be discussed on the web later in the week.
This morning in the continuation of upper body exercises a new twist was when Deb indicated we were going to the parallel bars. I was a little confused because morning is more occupational therapy and afternoon is physical therapy concentrating on legs. What we ended up doing was practicing standing. I was able to push myself out of the chair and transfer my hands to the parallel bars which were a little higher. On the first attempt I was able to stand for 40 seconds. On the second attempt I was able to stand for 60 seconds. My right leg continues to lag behind the left. Locking the knee in place is part of the difficulty.
In afternoon therapy, I continued practicing transfers with and without a sliding board (a board that serves as a bridge from one surface to another. You slide your body from bed to chair, chair to bed). Non sliding board transfers involve standing pivoting and sitting. I also used the Omnicycle again. The right leg which I am concentrating on with the bike went from 16% effort to 22% effort so I am continuing to see some incremental improvement in the right leg.
Important appointments and meetings this week
I do have a doctor appointment on Wednesday with my oncologist. It is anticipated that we will be discussing treatment plans for the melanoma and details of the most recent PET scan. On Thursday, Rick and I will be meeting with the rehab center staff to get an overall evaluation of progress since my arrival. They call it a discharge planning meeting which of course concerned me at first until we realized exactly what the meeting entails.
Results of both the oncology appointment and the planning meeting will be discussed on the web later in the week.
Sunday, June 15, 2008
Weekend physical therapy
I don't have scheduled therapy on the weekend, but each of my therapists has suggested exercises I can do unassisted. Light weights allow me to continue to improve upper body strength. A better understanding of the muscles that need the most improvement in my legs help me to target them specifically. I'm certain many of my guests this weekend didn't realize I was exercising my legs while they were visiting.
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Surrounded by love
What a weekend. I literally felt as if I was surrounded by love all weekend. Between two wonderful friends Jim and Jim coming to visit from Baltimore, Rick bringing Margo and Simon for a visit Saturday, visits from Chuck and Ron, Mike and Mike, Steve and Ben and Leslie (a former St. Vincent's Jacksonville colleague going back 28 years) it was a busy weekend here. More emails, blog comments, cards and phone calls added to the busy weekend. And every bit of it felt great. I continue to be humbled by the outpouring of support and encouragement and strengthened by it. My thanks to all for your prayers.
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Saturday, June 14, 2008
A funny Birthday Card
Grandmother Cronise sent so many cards that one year my birthday card was signed "Katherine Cronise" but was also signed (Grandmother) after she realized what she had done. We laughed about that for a LONG time.
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