In 2005 Doug and I were gifted with a peace Lilly. It had many beautiful white blooms on it when it came to live at our house. I transplanted it to a larger pot once. When the leaves droop, I water it.
When the original white flowers said good-bye, I was sure others would soon replace them. For the entire year of 2006 and even 2007 up until November no white flower appeared—just lovely large green leaves that called to me when they needed a drink of water.
Doug was diagnosed with cancer in October. As I was watering Lilly one day in November just one white flower shot up through the foliage to greet me. It lasted a long time. It reminded me that God’s second book is nature. It was a message I needed at that particular time. It may seem a bit way out but I took that one white flower on a peace Lilly as a sign of encouragement as we faced some very dark days.
That bloom is gone.
Friday was the American Cancer Society Relay for Life event here in Burleson. If you have never observed one in your town, you must go just for the first 1-2 hours for the opening as well as to watch the first lap around the track. (The event lasts all night long and one member from each team in on the track walking throughout the night.)
We first became involved with Relay through our ministry-driven Sabbath School class in Lincoln, Nebraska. It was a real witness/ministry to have our very-community-prominent church involved with so many other churches, businesses and not-for-profit teams in something so positive and important. So when we moved to Texas I went to check out the one in this city. It wasn’t the same because I didn’t know anyone or wasn’t part of a team.
This year was different. The impact hit home. The monies raised go for cancer research as well as to help those people who could not otherwise afford testing and cancer treatment. Relay does not focus on any one cancer like Race for the Cure does for the fight against Breast Cancer for example.
I’ll spare you the details but suffice it to say that Doug walked the “survivors lap" around the track (standard size high school track with teams camped every inch around it). Survivor t-shirts were purple so the survivors were easily identified when they all together take that first lap. As they walked or were pushed in wheel chairs or pulled in little red wagons around the track people cheered and clapped encouragment.
The caregiver lap was next and then all the teams from various community groups walked as a team. From then on one member from each team would stay on the track all night long.
It was encouraging to see the hundreds of survivors in this one small city. I don’t have the exact count yet but there were hundreds of all ages. When I get time I’ll post a picture of Doug. The back of his shirt said, “Celebrate but Remember. Fight back”. We are fighting.
We start the stem cell transplant journey tomorrow morning. Doug gets the central line “port” put in his chest. He has been on oral chemo all this time so this will be a new thing. He’ll be in the clinic for labs and then surgery which, according to our schedule, won’t last long but Doug will need to remain in the hospital at least 6 hours after surgery to be sure all is well with his new enhancement!
Today I bought some nylon tape and some cloth tape to see which will work best. We'll put “Press and Seal” over the bandage and tape that to Doug who has to have a shower to function. He knows the risk of infection so will be very cautious. I’m sure we both have a lot to learn.
The peace Lilly has been flower-free for a couple of months now. Last week one white flower looked up at me as I gave the plant her drink….Lilly's flower stands tall today.
~Carole
Tuesday, April 29, 2008
Tuesday, April 22, 2008
Break
I've decided that anyone living with any life-threatening disease needs a break from making that their daily focus. Doug and I were fortunate enough to have that break before heading into the bone marrow transplant that starts in earnest April 30th.
It is nothing short of a miracle of God's grace and answers to your prayers that Doug has been working now for 3 months, traveling and he even attended meetings in the North Carolina last week specifically for his continuing education with others who do similiar work in the United States and Canada. I went with Doug and had my own relaxation while he was in meetings. We also had times together to build lasting memories. During our time away we didn't even mention anything to each other about cancer or what is ahead. It was a refreshing change of pace.
That changed when we returned this week. On Monday we went to Dallas and met with Kristi, the transplant coordinator. She went over Doug's daily schedule for the month of May. Doug will be treated on an out-patient basis. Some days he'll have to be at the clinic all day. On other days just until his labs are drawn and review of his progress is evaluated. Kristi also reviewed the results of all his previous tests and his current labs/marker numbers. She wanted to answer any questions we might have before he signed the official consent forms for the transplant.
When Dr. Collins came into the room to answer any questions we might have of him he acknowledged that after reading through Dr. Mandells reports from November onward that Doug had been a very ill man. He confirmed that the disease caused that. Now the disease is under control. He didn't sugar coat the fact that there will be days when Doug will have similiar feelings (fatique, nasua, pain, weakness, etc.) but for every sympton there is something they can do to make him comfortable. Doug just needs to speak up and let them know immediately what is bothersome to him.
Their goal is to destroy all remaining cancer then bring him back to health. We both feel we have been at the lowest possible place already. This time if we go to that point again it will only be short-lived and there will be a team of specialists to assist us at every step of the journey. Before it was hard on me as I felt so responsible for making the correct decisions for his care.
We are thinking positive thoughts. In fact when Doug's colleagues at the meetings would say, "Doug, it is so good to see you." His reply was "It's good to be seen." He still can't believe that he has cancer. Like all of us we think that a terminal disease is something other people get. Yet when we go to clinic and wait in waiting rooms we realize that cancer is no respecter of age, race, gender or any other stereotypical classification.
We are looking forward to having this behind us and appreciate your continued prayers and support. Even though we'll be very busy, I'll try to blog as often as possible.
~Carole
It is nothing short of a miracle of God's grace and answers to your prayers that Doug has been working now for 3 months, traveling and he even attended meetings in the North Carolina last week specifically for his continuing education with others who do similiar work in the United States and Canada. I went with Doug and had my own relaxation while he was in meetings. We also had times together to build lasting memories. During our time away we didn't even mention anything to each other about cancer or what is ahead. It was a refreshing change of pace.
That changed when we returned this week. On Monday we went to Dallas and met with Kristi, the transplant coordinator. She went over Doug's daily schedule for the month of May. Doug will be treated on an out-patient basis. Some days he'll have to be at the clinic all day. On other days just until his labs are drawn and review of his progress is evaluated. Kristi also reviewed the results of all his previous tests and his current labs/marker numbers. She wanted to answer any questions we might have before he signed the official consent forms for the transplant.
When Dr. Collins came into the room to answer any questions we might have of him he acknowledged that after reading through Dr. Mandells reports from November onward that Doug had been a very ill man. He confirmed that the disease caused that. Now the disease is under control. He didn't sugar coat the fact that there will be days when Doug will have similiar feelings (fatique, nasua, pain, weakness, etc.) but for every sympton there is something they can do to make him comfortable. Doug just needs to speak up and let them know immediately what is bothersome to him.
Their goal is to destroy all remaining cancer then bring him back to health. We both feel we have been at the lowest possible place already. This time if we go to that point again it will only be short-lived and there will be a team of specialists to assist us at every step of the journey. Before it was hard on me as I felt so responsible for making the correct decisions for his care.
We are thinking positive thoughts. In fact when Doug's colleagues at the meetings would say, "Doug, it is so good to see you." His reply was "It's good to be seen." He still can't believe that he has cancer. Like all of us we think that a terminal disease is something other people get. Yet when we go to clinic and wait in waiting rooms we realize that cancer is no respecter of age, race, gender or any other stereotypical classification.
We are looking forward to having this behind us and appreciate your continued prayers and support. Even though we'll be very busy, I'll try to blog as often as possible.
~Carole
Wednesday, April 2, 2008
UTSWMC 3-30-08_Tests
Monday we spent the day in Dallas at UTSWMC. We missed tornado weather in Burleson. Neighbors reported that it "rained" sheets of ice which explained why we had to clean up a mess of leaves (and the "worm-like" new budding danglers on the oak trees) around our deck and in the pool. Hail left pit marks on our fence, ferns and flowers but it could have been much worse.
It was interesting for us to meet with the social worker. Doug saw no need for it--until afterward… (What a man!!) It was a1 1/2 hour visit with Dale, a member of the transplant team. As it turns out Dale is the son of a Methodist minister whose father also became an administrator in the Methodist Conference. He understands some of Doug's type A ways from living with his father!
The meeting was as much a family history intake as anything. He also went over our finances and took a copy of Doug's health care power of attorney (and the Texas "Directive") which is required before ANYONE can talk to me or give me a sheet of paper with Doug's personal information on it. The forms were also required to have at the hospital admissions office prior to Doug’s tests. (Those of you who don't have someone named may want to consider ramping that up even if you are young and in the best of health. A parent can't talk on behalf of a child over 18 or a wife for her husband or a sister for her brother, etc., etc. etc.)
When it came to Doug's health history it also came up that Doug was adopted. Dale asked how that affected his childhood-teen years and attitude towards adoption now. Doug replied that his own experience was so positive that we adopted both of our children.
Dale didn't seem to know much about Adventists. Doug told him Adventist roots are in Methodism and that my most recent college teaching was at Nebraska Wesleyan University when we lived in Lincoln. This gave us “connection”. What he was getting at when asking what Adventists believe was to determine if any of the treatments Doug might need--such as blood transfusions-- would interfere with Doug's religious beliefs. (He actually said—“Like Jehovah Witnesses?”) Since Doug has had 7 transfusions already Dale was reassured by Doug that he is putting his life into the hands of the transplant team.
Dale is someone I can turn to during Doug's treatment. He said if he likes people real well he'll give them his pager number to contact him on weekends otherwise he's available M-F.
He then gave us his pager number!!
I feel more comfortable now with having someone who will watch out for us and help us know who to communicate what to as needed with all these people involved on the bone marrow transplant team:
The Doctor
The Oncology Fellow
The Physician Assistant
The Nurse Practitioner
The transplant coordinator
The transplant nurses
The dietician
The chaplain
The pharmacist
The OT/PT therapist
And Dale, the social worker.
Dale's report from our visit is put in Doug's chart for the entire transplant team to refer to. A copy is sent to the team at the Zane Lipsey hospital which is where Doug would go if he needs to be hospitalized. The staff assisting us there will also know our background and some of our unique-to-us peculiarities.
Dale also gave us a feel for the apartments the Medical Center has for patients being treated on an out-patient basis. He also told us about the hospital room should Doug need to be hospitalized. The hospital room he described is also like a one-room (fairly good size) small apartment--with a small refrig, flat screen TV, CD/VCR, extra bed for the caregiver if she wants to stay, shower, etc. The rooms have Internet access so we’ll take Doug’s laptop. Each room is on a special air exchange system. No plants or flowers are allowed. The nurses are specifically trained for transplant care and will "dispose" of things and people if they interfer!!!
Before the transplant a chaplain meets with us to do a "blessing" that signals the beginning of a new beginning but one that requires us to forever live with cancer.
Dale wanted to be sure we knew what we were getting into and made us feel very cared for. He also agreed with us that compared to what we shared with him about what Doug had already experienced the impact of the transplant and the recovery probably wouldn't be much worse. Fatigue is something we know about but this time will also know it is 'normal'. The potential for infection will be our greatest enemy.
The 3 tests Doug had after the social worker's visit happened at St. Paul’s hospital (there are 4 or more hospitals on this campus). We were there 6 hours. Much of the time we were waiting in the waiting rooms. All the tests were ones Doug had never had before. All were in different areas of the facility.
During the skeletal scan Doug said his whole body was "radiated". It was different from the MRI he had two weeks ago! The next was the MUGA (heart test). They drew his blood then he had to wait 1/2 hour in the nuclear medicine area before going back for the test. The technician put electrodes on his chest and he lay on a pyramid-like machine. The tech tracked the rate of Doug’s blood flow through his ventricles via her computer. She also tracked the rate the left and right ventricles opened and closed. This gives the doctor Doug’s base line as the large dose of chemo can impact these functions.
The other test was a pulmonary test where Doug was put into a glass chamber and had a tube in his mouth. The technician told him when to breathe in and out, slow, fast, deep breath, shallow breath, etc. At times the tech didn't have any air flowing into the tube while at other times there was air flow. I don't understand it all but probably even Doug didn't either.
We do have access to all his test results online at a secure website. At our next visit we will go over them with Dr. Collins. It is just amazing what they can see and do with ones body these days!
This morning he and one of his collegues flew down to the Valley. They will return tonight.
We are learning to live with cancer.
~Carole
It was interesting for us to meet with the social worker. Doug saw no need for it--until afterward… (What a man!!) It was a1 1/2 hour visit with Dale, a member of the transplant team. As it turns out Dale is the son of a Methodist minister whose father also became an administrator in the Methodist Conference. He understands some of Doug's type A ways from living with his father!
The meeting was as much a family history intake as anything. He also went over our finances and took a copy of Doug's health care power of attorney (and the Texas "Directive") which is required before ANYONE can talk to me or give me a sheet of paper with Doug's personal information on it. The forms were also required to have at the hospital admissions office prior to Doug’s tests. (Those of you who don't have someone named may want to consider ramping that up even if you are young and in the best of health. A parent can't talk on behalf of a child over 18 or a wife for her husband or a sister for her brother, etc., etc. etc.)
When it came to Doug's health history it also came up that Doug was adopted. Dale asked how that affected his childhood-teen years and attitude towards adoption now. Doug replied that his own experience was so positive that we adopted both of our children.
Dale didn't seem to know much about Adventists. Doug told him Adventist roots are in Methodism and that my most recent college teaching was at Nebraska Wesleyan University when we lived in Lincoln. This gave us “connection”. What he was getting at when asking what Adventists believe was to determine if any of the treatments Doug might need--such as blood transfusions-- would interfere with Doug's religious beliefs. (He actually said—“Like Jehovah Witnesses?”) Since Doug has had 7 transfusions already Dale was reassured by Doug that he is putting his life into the hands of the transplant team.
Dale is someone I can turn to during Doug's treatment. He said if he likes people real well he'll give them his pager number to contact him on weekends otherwise he's available M-F.
He then gave us his pager number!!
I feel more comfortable now with having someone who will watch out for us and help us know who to communicate what to as needed with all these people involved on the bone marrow transplant team:
The Doctor
The Oncology Fellow
The Physician Assistant
The Nurse Practitioner
The transplant coordinator
The transplant nurses
The dietician
The chaplain
The pharmacist
The OT/PT therapist
And Dale, the social worker.
Dale's report from our visit is put in Doug's chart for the entire transplant team to refer to. A copy is sent to the team at the Zane Lipsey hospital which is where Doug would go if he needs to be hospitalized. The staff assisting us there will also know our background and some of our unique-to-us peculiarities.
Dale also gave us a feel for the apartments the Medical Center has for patients being treated on an out-patient basis. He also told us about the hospital room should Doug need to be hospitalized. The hospital room he described is also like a one-room (fairly good size) small apartment--with a small refrig, flat screen TV, CD/VCR, extra bed for the caregiver if she wants to stay, shower, etc. The rooms have Internet access so we’ll take Doug’s laptop. Each room is on a special air exchange system. No plants or flowers are allowed. The nurses are specifically trained for transplant care and will "dispose" of things and people if they interfer!!!
Before the transplant a chaplain meets with us to do a "blessing" that signals the beginning of a new beginning but one that requires us to forever live with cancer.
Dale wanted to be sure we knew what we were getting into and made us feel very cared for. He also agreed with us that compared to what we shared with him about what Doug had already experienced the impact of the transplant and the recovery probably wouldn't be much worse. Fatigue is something we know about but this time will also know it is 'normal'. The potential for infection will be our greatest enemy.
The 3 tests Doug had after the social worker's visit happened at St. Paul’s hospital (there are 4 or more hospitals on this campus). We were there 6 hours. Much of the time we were waiting in the waiting rooms. All the tests were ones Doug had never had before. All were in different areas of the facility.
During the skeletal scan Doug said his whole body was "radiated". It was different from the MRI he had two weeks ago! The next was the MUGA (heart test). They drew his blood then he had to wait 1/2 hour in the nuclear medicine area before going back for the test. The technician put electrodes on his chest and he lay on a pyramid-like machine. The tech tracked the rate of Doug’s blood flow through his ventricles via her computer. She also tracked the rate the left and right ventricles opened and closed. This gives the doctor Doug’s base line as the large dose of chemo can impact these functions.
The other test was a pulmonary test where Doug was put into a glass chamber and had a tube in his mouth. The technician told him when to breathe in and out, slow, fast, deep breath, shallow breath, etc. At times the tech didn't have any air flowing into the tube while at other times there was air flow. I don't understand it all but probably even Doug didn't either.
We do have access to all his test results online at a secure website. At our next visit we will go over them with Dr. Collins. It is just amazing what they can see and do with ones body these days!
This morning he and one of his collegues flew down to the Valley. They will return tonight.
We are learning to live with cancer.
~Carole
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