Yesterday was my brother’s birthday. I was talking with him on the phone in our family room. Doug shut the bedroom door. (During this time I’m sleeping in the guest room so that both of us get the rest we need.) I never gave it another thought when Doug shut his door. I kept on talking.
I checked on Doug once during the night but I guess it wasn’t the right time. This morning when I heard him stirring I went in to ask what he felt like having for breakfast. He told he had a horrible night. I’ll spare you the details but he probably lost his extra 7 pounds….
He should have had his nausea medication but didn’t call to me to ask for it. He was too sick plus he told me he didn’t want to interfere with my rest. I told him that I am here for him and rest comes to me when needed. I don’t want him to get dehydrated or have to go into the hospital again if we can prevent it.
Because of his condition I called the weekend on-call number to ask which of the three nausea meds I should give him. Doug described his night to the Doctor and we started the nausea pills and other items he recommended. I am recording his fluid intake and gently forcing him to drink. He has been sleeping most of today. He didn’t get much rest last night.
He says he’s learned his lesson and knows he needs to call me. We have a bell he can ring and I’d be by his side in a second. He just has to decide to use it.
So today I’m being quiet. I know he was disappointed he didn’t just sail right through the chemo. I’m sure the clinic team knew he wouldn’t and had us prepared with the proper medication. He just has to decide to do what they tell him to do.
He says he feels much better this afternoon but continues to nap. He hates how weak he is feeling because he has memory of that feeling from before. I remind him that he did get stronger and he will again.
I believe were given two days “off” this weekend because the team at the clinic knows the pattern and knew we would need them. While I don’t agree with Doug that it is wise to care for him self throughout the night at home after a heavy dose of chemo, I realize he did it unselfishly because he wanted me to get my rest. He has always been considerate of me throughout our married life but I told him this is not the time to think of my needs. It's time for him to let me take care of him.
~Carole
Saturday, May 3, 2008
May 2
The side effect of Doug’s treatment yesterday has been cramping in his stomach. He tells me he has still not had one tinge of nausea. Other than that (and reduced energy that was expected) he wanted you to know all is good.
We had a very short clinic visit today—basically they weighed Doug. Even though he visited the bathroom every two hours during the night to eliminate fluids, overnight he gained 7 pounds. He said he felt "bloated".
They unhooked him and freed him from his suite case. Nothing else was needed today. We were free to go home. We don’t go back until Monday. According to the schedule it is the only weekend we don’t have to go to check into the clinic.
When Doug told the chemo nurse he hadn't had nausea she said to have the medication on hand—just in case.
~Carole
We had a very short clinic visit today—basically they weighed Doug. Even though he visited the bathroom every two hours during the night to eliminate fluids, overnight he gained 7 pounds. He said he felt "bloated".
They unhooked him and freed him from his suite case. Nothing else was needed today. We were free to go home. We don’t go back until Monday. According to the schedule it is the only weekend we don’t have to go to check into the clinic.
When Doug told the chemo nurse he hadn't had nausea she said to have the medication on hand—just in case.
~Carole
May 1, 2008
Before I describe much more I want to tell those of you who have cancer, read this blog and may be considering a stem cell transplant that everyones treatment process is unique. As we have talked to others in Dr. Collins clinic in the waiting room we have come to realize that. We talked to a man today that had a different type of blood cancer. Even though Dr. Collins is his physician his treatment has been very different from Doug's.
So don't read this blog through May if reading would give you more concern than comfort. The same Master Physician that is guiding us will guide you but may take you in an entirely different direction. Our intent in sharing our journey is so that our friends and family can keep up with what is going on with us and know how to pray. We are not describing a standard treatment for blood cancers nor for multiple myeloma or a stem cell/bone marrow transplant.
Today we had to be at the clinic by 9:30 for 7 hours of sitting. Doug was in a private area and usheredd into what has become known to us as a chemo chair. His chemo nurse’s name was Debbie. Right away she made us both feel as much at ease as is possible under the circumstance. I had taken lots of reading materials and sat in a chair across the room from Doug.
First he received an infusion of saline solution to hydrate his system. You’ve all seen how the bags hang from a moveable pole with hooks on them. When that bag was empty they brought a smaller bag that contained an anti-nausea medication Zofran combined with 10 mg Dexamethasone, the latter of which he has taken orally since November and doesn’t like how it makes him feel.
When those drips were complete Debbie brought in a large bag that she referred to as a heavy dose chemo, 7600 mg of Cytoxin. (This is not the "sledge hammer" chemo Dr. Collins told us about in his initial consult. Just an extra one he determined Doug needed prior to the stem cell harvest. The hammer comes down May 20th if we stay on schedule.)
I asked Debbie if it were true that the poison goes right through Doug’s heart. She said, “ Yes. Think of the heart as a washing machine. Your heart swishes the blood around inside and when the heart beats, through muscular action with a whoosh ejects the poision out of the heart into the system as waste. It's done its job and needs to leave the body.”
The reason she wanted Doug to drink water while receiving the fluids during this process is that the bladder serves as a holding tank for waste. She wants him to get Cytoxin out of his system as quickly as possible so that it won’t irritate his bladder.
Doug was hungry so I went up to the Food Court to get us both something to eat. Soon after we finished eating a lady named Nellie introduced herself as being the representative from Cater Blood Care organization. She will be doing the stem cell harvest, holding of the cells for 24 hours, then returning them to Doug through infusion in his central line. The harvest part of the process is scheduled for May 13th.
Nellie told us that when she was young she wanted to be a nurse but she hated the sight of blood. She got married and had a child. At age 22 job she got a job at the blood bank where she became fascinated with blood science. (I’d guess her to be in her late 40’s now.) She worked some in the mobile clinics with donors and eventually worked up to be the regional supervisor. She admitted to becoming bored after awhile so when the opportunity came to her three years ago to transfer to the stem cell team she did so. She now feels she has the big picture of the entire process.
She had papers for Doug to read, a questionnaire to fill out, and need of his signature. She answered our questions and said she will see us in a few weeks.
When the chemo bag was empty they brought in one more bag of saline solution. During this entire process Doug could walk from the chemo room with his pole to the men’s room!
When the last bag was empty Debbie brought in a suite case that had the largest bag of fluids yet. It contained several gallons of what Debbie told us was just hydration fluid to help flush out the Cytoxyn.
A tube from the one end of the bag went into a computer that is about the size of a paper back book. The tube from the other end went into a tube connected to one of the “straws” running into Doug’s central line. Thus he was connected to his suite case! It was on wheels. When he walked and pulled it behind him he looked like he was heading to the airport.
His dressing was changed before we left and it looks real good. He has three different medications for nausea but has not felt the need for them yet.
~Carole
So don't read this blog through May if reading would give you more concern than comfort. The same Master Physician that is guiding us will guide you but may take you in an entirely different direction. Our intent in sharing our journey is so that our friends and family can keep up with what is going on with us and know how to pray. We are not describing a standard treatment for blood cancers nor for multiple myeloma or a stem cell/bone marrow transplant.
Today we had to be at the clinic by 9:30 for 7 hours of sitting. Doug was in a private area and usheredd into what has become known to us as a chemo chair. His chemo nurse’s name was Debbie. Right away she made us both feel as much at ease as is possible under the circumstance. I had taken lots of reading materials and sat in a chair across the room from Doug.
First he received an infusion of saline solution to hydrate his system. You’ve all seen how the bags hang from a moveable pole with hooks on them. When that bag was empty they brought a smaller bag that contained an anti-nausea medication Zofran combined with 10 mg Dexamethasone, the latter of which he has taken orally since November and doesn’t like how it makes him feel.
When those drips were complete Debbie brought in a large bag that she referred to as a heavy dose chemo, 7600 mg of Cytoxin. (This is not the "sledge hammer" chemo Dr. Collins told us about in his initial consult. Just an extra one he determined Doug needed prior to the stem cell harvest. The hammer comes down May 20th if we stay on schedule.)
I asked Debbie if it were true that the poison goes right through Doug’s heart. She said, “ Yes. Think of the heart as a washing machine. Your heart swishes the blood around inside and when the heart beats, through muscular action with a whoosh ejects the poision out of the heart into the system as waste. It's done its job and needs to leave the body.”
The reason she wanted Doug to drink water while receiving the fluids during this process is that the bladder serves as a holding tank for waste. She wants him to get Cytoxin out of his system as quickly as possible so that it won’t irritate his bladder.
Doug was hungry so I went up to the Food Court to get us both something to eat. Soon after we finished eating a lady named Nellie introduced herself as being the representative from Cater Blood Care organization. She will be doing the stem cell harvest, holding of the cells for 24 hours, then returning them to Doug through infusion in his central line. The harvest part of the process is scheduled for May 13th.
Nellie told us that when she was young she wanted to be a nurse but she hated the sight of blood. She got married and had a child. At age 22 job she got a job at the blood bank where she became fascinated with blood science. (I’d guess her to be in her late 40’s now.) She worked some in the mobile clinics with donors and eventually worked up to be the regional supervisor. She admitted to becoming bored after awhile so when the opportunity came to her three years ago to transfer to the stem cell team she did so. She now feels she has the big picture of the entire process.
She had papers for Doug to read, a questionnaire to fill out, and need of his signature. She answered our questions and said she will see us in a few weeks.
When the chemo bag was empty they brought in one more bag of saline solution. During this entire process Doug could walk from the chemo room with his pole to the men’s room!
When the last bag was empty Debbie brought in a suite case that had the largest bag of fluids yet. It contained several gallons of what Debbie told us was just hydration fluid to help flush out the Cytoxyn.
A tube from the one end of the bag went into a computer that is about the size of a paper back book. The tube from the other end went into a tube connected to one of the “straws” running into Doug’s central line. Thus he was connected to his suite case! It was on wheels. When he walked and pulled it behind him he looked like he was heading to the airport.
His dressing was changed before we left and it looks real good. He has three different medications for nausea but has not felt the need for them yet.
~Carole
The Central Line
I haven’t had a chance to sit down at my computer until now to tell you that the placement of Doug’s central line went well.
We first checked into the clinic for a chest X-ray and labs because Doug had been battling a bit of pneumonia and a cough. He’d been on an antibiotic so the team wanted to be sure he had cleared up enough to proceed as planned. Because we had to wait to be seen and wait after for test results we were an hour later than scheduled to be at St. Paul’s hospital for the surgery. Doug did get the OK from Dr. Collins and we are now on the next leg of our journey to fight back.
I’ve asked Doug to dictate to me the happenings of the next few hours as obviously I was not with him in surgery.
Doug: “They gave me one of those all-to-familiar hospital gowns and put me in a bed in a surgery “hold” room. I was asked at least three times who I was even though I had an arm band on with my name on it that they looked at each time. I wasn't sure I wanted people working on me who couldn't read :-)
A real nice hippy-looking type fellow came in and told me he was going to be my nurse. We chatted and he told me he had been a nurse for 20 years in various hospitals in Dallas. Then a Korean female nurse came in who said she’d be checking in on me. She told me what was going to happen and apologized that the surgeon was in a long procedure but that I would be next.
I was wheeled into the OR and prepped. They put a paper drape over my body--including my head—so that I wouldn’t be able to see them working on my chest. That was probably a good idea!
They gave me a local injection in my chest (Lanacane _sp?) and began the procedure. I was awake, talking and joking with the folk which they told me they appreciated. I felt no pain.
I now have a hole in the right side of my chest. (Think don’t hug me there) with a line that goes up into my neck and then makes a 180 degree turn down into my heart. From the internal line three clamped tubes come out and hang down on my chest approximately 4 inches. Carole refers to them as my straws. The good news is that I don’t have to get poked and prodded every time they draw my blood for lab work.
They use these three tubes to draw blood or to infuse liquids and medications including chemo drugs. They will also be used to harvest my stem cells, give the grand slam chemo, and infuse my stem cells back into my blood stream. It is my job to treat my filling station with the greatest respect and care! (Of note is that the three clamps are red, white and blue.)
They put a large dressing on the area then wheeled me back into the holding area bed to watch me for an hour. I had not eaten the day before so they gave me a sandwich and an apple which I enjoyed. After 1 hour I was put into a wheel chair and taken out to our car.
Like other Dallas and Fort Worth worthies, I now have my own personal driver. Her name is Carole!”
~ Doug and Carole
PS During the month of May I'll be using the date as the label of the post to make it easier to follow the day-to-day treatment process.
We first checked into the clinic for a chest X-ray and labs because Doug had been battling a bit of pneumonia and a cough. He’d been on an antibiotic so the team wanted to be sure he had cleared up enough to proceed as planned. Because we had to wait to be seen and wait after for test results we were an hour later than scheduled to be at St. Paul’s hospital for the surgery. Doug did get the OK from Dr. Collins and we are now on the next leg of our journey to fight back.
I’ve asked Doug to dictate to me the happenings of the next few hours as obviously I was not with him in surgery.
Doug: “They gave me one of those all-to-familiar hospital gowns and put me in a bed in a surgery “hold” room. I was asked at least three times who I was even though I had an arm band on with my name on it that they looked at each time. I wasn't sure I wanted people working on me who couldn't read :-)
A real nice hippy-looking type fellow came in and told me he was going to be my nurse. We chatted and he told me he had been a nurse for 20 years in various hospitals in Dallas. Then a Korean female nurse came in who said she’d be checking in on me. She told me what was going to happen and apologized that the surgeon was in a long procedure but that I would be next.
I was wheeled into the OR and prepped. They put a paper drape over my body--including my head—so that I wouldn’t be able to see them working on my chest. That was probably a good idea!
They gave me a local injection in my chest (Lanacane _sp?) and began the procedure. I was awake, talking and joking with the folk which they told me they appreciated. I felt no pain.
I now have a hole in the right side of my chest. (Think don’t hug me there) with a line that goes up into my neck and then makes a 180 degree turn down into my heart. From the internal line three clamped tubes come out and hang down on my chest approximately 4 inches. Carole refers to them as my straws. The good news is that I don’t have to get poked and prodded every time they draw my blood for lab work.
They use these three tubes to draw blood or to infuse liquids and medications including chemo drugs. They will also be used to harvest my stem cells, give the grand slam chemo, and infuse my stem cells back into my blood stream. It is my job to treat my filling station with the greatest respect and care! (Of note is that the three clamps are red, white and blue.)
They put a large dressing on the area then wheeled me back into the holding area bed to watch me for an hour. I had not eaten the day before so they gave me a sandwich and an apple which I enjoyed. After 1 hour I was put into a wheel chair and taken out to our car.
Like other Dallas and Fort Worth worthies, I now have my own personal driver. Her name is Carole!”
~ Doug and Carole
PS During the month of May I'll be using the date as the label of the post to make it easier to follow the day-to-day treatment process.
Tuesday, April 29, 2008
The Peace Sign
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
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 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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