We had good news at Doug’s Oncologist’s office this week. He told Doug that based upon the numbers in his blood and urine chemistry 90% of his myeloma is gone. This needs to be measured against the fact that when diagnosed 75% of his bone marrow contained myeloma cells.
The dosage of the chemo therapy has been significantly reduced. Doug even went into his office for a few hours to do “real work” this week. Although the Oncologist indicates Doug should be able to work some (as long as he listens to his body) his family is a bit concerned and would err on the side of more caution. In spite of that fact we’ve decided to let Doug have some control over his own life. :-)
One thing we did to celebrate Doug’s improvement was to clear anything in our bedroom that looked like he has been/is sick. Yes, he still has cancer. Yes, he still has pain. Yes, he still is feels weak and therefore is short on stamina, especially on the one day per week he has the steroids that bind to his primary chemo drug.
Yes, the Oncologist is still talking about referring us to the transplant center for his stem cell harvest leading up to a bone marrow transplant. His immediate plan is to start giving Doug a monthly IV of a drug to strengthen his bones and reduce the chance of bone fracture. Myeloma cells wear away portions of bone leaving small holes called osteolytic lesions. These lesions can leave bones weak and fragile.
We have just today heard back from the other clinic about Doug’s blood work sent to Greece. We go to get the results and their treatment recommendations this coming Monday. Our Oncologist told us this week that he is willing to receive their information by fax to monitor any potential conflicting treatments. Now this is a direct answer to prayer as others of our friends in traditional medical practice didn’t give us much hope that any oncologist would want to be bothered. That makes us appreciate the one we have even more!
One of our friends who just learned of Doug’s battle called Doug this week and said he’d “storm the gates of heaven” on Doug’s behalf. There are days Doug feels satanic attacks. So don’t stop strom’in. But don’t forget to praise our Father also!!! We’ve come this far by faith, prayer, wonderful medical care and you, our family and friends.
~Carole
Thursday, January 31, 2008
Thursday, January 24, 2008
Greece
While Doug was a pastor in Wenatchee, Washington he and several of the members of the church went with Pastor HMS Richards, Sr. on a tour of the Holy Lands. The group also toured Greece. My parents went on the trip with them. They brought back wonderful pictures to me, the mother of our infant son who seemed more important to me then a trip of a lifetime!!! At that time Doug never dreamed he’d return, in part, to Greece. Let me explain:
We left this week on Tuesday morning for an appointment we had at a medical center about one and a half hours from where we live. A friend went with us to take notes while we talked to
Dr. Ray Hammon, Jr. and Dr. Robert Gilbard about what their Alternative and Traditional Medical Center (ATMC) to see what they might be able to do for Doug’s cell health. While these doctors treat far more ailments and issues of aging than just cancer, we had heard they come along side a cancer patient to support cancer patients on chemotherapy and asses his/her overall lifestyle health so that once in remission or healed the cancer doesn’t reappear. Their experience supporting patients with cancer was our focus.
As we all know chemo kills good cells as well as cancerous ones. Doug is responding to the chemo protocol he is currently being given but we also are concerned about his inability to process foods to gain weight rather than to continue to loose. We both have a desire to see if anything could help to increase his stamina. We wanted to know if there was anything we were missing that the ATMC could do for Doug that would compliment his treatment.
We went with open minds with the intent to just listen. We had prayed that we’d be guided in our discussion with the doctors, would ask essential questions, avoid any pressure and would later make our own informed decision. We have received many other helpful ideas and suggestions but this is one we decided to explore.
The goal of this medical center is to treat the body, mind (emotions and belief) and spirit (spiritual involvement that appeals to the patient) of an individual which they believe is necessary for total healing. Since we, too, believed in body-mind-spirit whole health before going to visit with them*. We felt comfortable that we’d be able to sense authentic intent vs. we-need-your-money hocus-pocus.
*Note: there is a difference between believing something and doing it especially when one is confronted with a terminal illness and is caught up in survival mode.
During our 4 hour visit we learned about the doctors’ relationship with Dr. Papasotiriou Ioannis, MD who is the head of the Molecular Medicine department at the R.G. C. C. Research Genetic Cancer Centre in Greece. Even before you meet with them the staff at ATMC make it clear that they do not treat the disease cancer. They insist that Doug continue with his medical specialists. They are glad to consult directly with any provider; they are not a replacement for them. They come along side the patient to give supportive care. We liked the sound of that balance.
For the most efficient and effective supportive care they could give Doug they told us how they feel it is best if they know from the start what agents will attack his specific cancer cells, with chemo therapy as well as the natural agents they use. They also know that cancer cells are “smart cells” that can hide and/or build resistance to chemical of any sort if prolonged treatment becomes necessary. That is why knowing any agent the cancer cell resists is also helpful.
Thus, a “chemosensitivity assay” is what Dr. Ioannis provides for the ATMC doctors. Without it they would be giving Doug a “best guess” of what they have seen work on other patients in their clinic with similar cancer diagnosis. They suggest that in many instances what chemo drugs the oncologist is using is done with a probability based upon the latest findings from patients enrolled in clinical trials and reported in the literature. Their belief is that each individual’s DNA is unique and therefore a chemosensitivity assay for each patient will help both the patient’s own oncologist and those practicing integrative and functional medicine such as they target the cancer aggressively while at the same time specifically. The following sentences from their website explains chemosensitivity assay better than I can explain it.
“Chemosensitivity assay is a laboratory test that determines how effective specific chemotherapy agents are against an individual patient's cancer cells and what natural agents might be used to support the patient during cancer therapy…Chemosensitivity assays predict tumor cell sensitivity, in other words which agent would be most effective. Choosing the most effective agent can help patients to avoid the physical, emotional, and financial costs of failed therapy and experience an increased quality of life. Chemosensitivity assay has progressed to the point where it is 85-90 % effective.”
There was no pressure at all to run the Greece test. We were given as much time as we needed alone to make any and all decisions. We could have used their other services and let them guess what would work best with Doug’s type of cancer.
I’ll spare you more of the details but we did make the decision to have several tests run while at this clinic, not the least of which was to draw 25 ml of whole blood from Doug. Then Doug witnessed them as they added EDTA-ca as anti-coagulant then packed his blood in water ice packs and put it into a special container to express mail to Greece. Doug saw them seal the container and put his name on the shipping label.
This ATMC has a guaranteed delivery time with DHL to arrive in Greece no later than 36 hours. In addition, there is a confirmation system set up with DHL and Dr. Ioannis and the Texas doctors that assures delivery and documents arrival time.
We were given a sheet with the instructions to give to our bank with the information they would need to wire funds from our account directly to Pireus Bank in Greece for the fees in Eruos required by Dr. Ioannis’s (hear after referred to as Dr. PI). I did the wire at the exchange rate yesterday BEFORE the U.S. stock market “surged” upwards.…
After I did the wire I had to fax ATMC the paper work from our bank with the confirmation number from the wire. Communication both at the ATMC and with us about this process made us both feel very much at ease.
Dr. PI’s report will be returned e-mail to the Texas doctors. With that report along with Doug’s cancer case history they obtained from him--including all his lab work from on-set to our last draw here at our lab here in town, all his prescription medications and any supplements, all his previous health history, and the other two tests the Texas doctors did on Tuesday-- our next consult at ATMC we'll get the Texas doctor's recommendations. We will then share these with our oncologist and go from there.
We were told that the best way for us to work with them starting that day would be to evaluate our current lifestyle against the lifestyle they know gives balanced, functional, quality of life for anyone. Dr. Hammon gave us a document outlining the clinic's plan for having a balanced life.
(Dr. Hammon holds the copyright so please don't ask me for it :-) He calls Big Ten Plan, a "functional life style improvement" that if followed will assist in preventing disease as well as aid during a patient's treatment and afterwards.
Here is the document's table of contents:
"Introduction
You must think right
You must talk and act right
You must breath right
You must drink right
You must eat right
You must move right
You must poop right
You must play right
You must rest right
You must be happy spiritually.”
In Conclusion" [1]
[1] Dr. E. Ray Hammon, Jr., Dc. DNBHE, NMD, Clinic Director
I should probably also share the credentials of Dr. Robert Gilbard, MD, F.A.C.O.G. He is the Medical Director.
The entire how-to document was given to us with a goal of our using it as a guide to help us make small changes in any area we are currently neglecting--as fast as we can. He realizes that lifestyle is not something one changes over night. ATMC stands ready to help.
A few of the ten are not difficult for us to institute starting yesterday. Doug and I talked about the fact that following Dr. Hammon’s Big Ten Plan in certain areas may be as big or bigger challenge for us than fighting cancer…We’ve known the above since we could think for ourselves. But the American way is to make excuses for what one cannot do because of____________.
You may want to fill in your blank(s) as we fill in ours.
~Carole
We left this week on Tuesday morning for an appointment we had at a medical center about one and a half hours from where we live. A friend went with us to take notes while we talked to
Dr. Ray Hammon, Jr. and Dr. Robert Gilbard about what their Alternative and Traditional Medical Center (ATMC) to see what they might be able to do for Doug’s cell health. While these doctors treat far more ailments and issues of aging than just cancer, we had heard they come along side a cancer patient to support cancer patients on chemotherapy and asses his/her overall lifestyle health so that once in remission or healed the cancer doesn’t reappear. Their experience supporting patients with cancer was our focus.
As we all know chemo kills good cells as well as cancerous ones. Doug is responding to the chemo protocol he is currently being given but we also are concerned about his inability to process foods to gain weight rather than to continue to loose. We both have a desire to see if anything could help to increase his stamina. We wanted to know if there was anything we were missing that the ATMC could do for Doug that would compliment his treatment.
We went with open minds with the intent to just listen. We had prayed that we’d be guided in our discussion with the doctors, would ask essential questions, avoid any pressure and would later make our own informed decision. We have received many other helpful ideas and suggestions but this is one we decided to explore.
The goal of this medical center is to treat the body, mind (emotions and belief) and spirit (spiritual involvement that appeals to the patient) of an individual which they believe is necessary for total healing. Since we, too, believed in body-mind-spirit whole health before going to visit with them*. We felt comfortable that we’d be able to sense authentic intent vs. we-need-your-money hocus-pocus.
*Note: there is a difference between believing something and doing it especially when one is confronted with a terminal illness and is caught up in survival mode.
During our 4 hour visit we learned about the doctors’ relationship with Dr. Papasotiriou Ioannis, MD who is the head of the Molecular Medicine department at the R.G. C. C. Research Genetic Cancer Centre in Greece. Even before you meet with them the staff at ATMC make it clear that they do not treat the disease cancer. They insist that Doug continue with his medical specialists. They are glad to consult directly with any provider; they are not a replacement for them. They come along side the patient to give supportive care. We liked the sound of that balance.
For the most efficient and effective supportive care they could give Doug they told us how they feel it is best if they know from the start what agents will attack his specific cancer cells, with chemo therapy as well as the natural agents they use. They also know that cancer cells are “smart cells” that can hide and/or build resistance to chemical of any sort if prolonged treatment becomes necessary. That is why knowing any agent the cancer cell resists is also helpful.
Thus, a “chemosensitivity assay” is what Dr. Ioannis provides for the ATMC doctors. Without it they would be giving Doug a “best guess” of what they have seen work on other patients in their clinic with similar cancer diagnosis. They suggest that in many instances what chemo drugs the oncologist is using is done with a probability based upon the latest findings from patients enrolled in clinical trials and reported in the literature. Their belief is that each individual’s DNA is unique and therefore a chemosensitivity assay for each patient will help both the patient’s own oncologist and those practicing integrative and functional medicine such as they target the cancer aggressively while at the same time specifically. The following sentences from their website explains chemosensitivity assay better than I can explain it.
“Chemosensitivity assay is a laboratory test that determines how effective specific chemotherapy agents are against an individual patient's cancer cells and what natural agents might be used to support the patient during cancer therapy…Chemosensitivity assays predict tumor cell sensitivity, in other words which agent would be most effective. Choosing the most effective agent can help patients to avoid the physical, emotional, and financial costs of failed therapy and experience an increased quality of life. Chemosensitivity assay has progressed to the point where it is 85-90 % effective.”
There was no pressure at all to run the Greece test. We were given as much time as we needed alone to make any and all decisions. We could have used their other services and let them guess what would work best with Doug’s type of cancer.
I’ll spare you more of the details but we did make the decision to have several tests run while at this clinic, not the least of which was to draw 25 ml of whole blood from Doug. Then Doug witnessed them as they added EDTA-ca as anti-coagulant then packed his blood in water ice packs and put it into a special container to express mail to Greece. Doug saw them seal the container and put his name on the shipping label.
This ATMC has a guaranteed delivery time with DHL to arrive in Greece no later than 36 hours. In addition, there is a confirmation system set up with DHL and Dr. Ioannis and the Texas doctors that assures delivery and documents arrival time.
We were given a sheet with the instructions to give to our bank with the information they would need to wire funds from our account directly to Pireus Bank in Greece for the fees in Eruos required by Dr. Ioannis’s (hear after referred to as Dr. PI). I did the wire at the exchange rate yesterday BEFORE the U.S. stock market “surged” upwards.…
After I did the wire I had to fax ATMC the paper work from our bank with the confirmation number from the wire. Communication both at the ATMC and with us about this process made us both feel very much at ease.
Dr. PI’s report will be returned e-mail to the Texas doctors. With that report along with Doug’s cancer case history they obtained from him--including all his lab work from on-set to our last draw here at our lab here in town, all his prescription medications and any supplements, all his previous health history, and the other two tests the Texas doctors did on Tuesday-- our next consult at ATMC we'll get the Texas doctor's recommendations. We will then share these with our oncologist and go from there.
We were told that the best way for us to work with them starting that day would be to evaluate our current lifestyle against the lifestyle they know gives balanced, functional, quality of life for anyone. Dr. Hammon gave us a document outlining the clinic's plan for having a balanced life.
(Dr. Hammon holds the copyright so please don't ask me for it :-) He calls Big Ten Plan, a "functional life style improvement" that if followed will assist in preventing disease as well as aid during a patient's treatment and afterwards.
Here is the document's table of contents:
"Introduction
You must think right
You must talk and act right
You must breath right
You must drink right
You must eat right
You must move right
You must poop right
You must play right
You must rest right
You must be happy spiritually.”
In Conclusion" [1]
[1] Dr. E. Ray Hammon, Jr., Dc. DNBHE, NMD, Clinic Director
I should probably also share the credentials of Dr. Robert Gilbard, MD, F.A.C.O.G. He is the Medical Director.
The entire how-to document was given to us with a goal of our using it as a guide to help us make small changes in any area we are currently neglecting--as fast as we can. He realizes that lifestyle is not something one changes over night. ATMC stands ready to help.
A few of the ten are not difficult for us to institute starting yesterday. Doug and I talked about the fact that following Dr. Hammon’s Big Ten Plan in certain areas may be as big or bigger challenge for us than fighting cancer…We’ve known the above since we could think for ourselves. But the American way is to make excuses for what one cannot do because of____________.
You may want to fill in your blank(s) as we fill in ours.
~Carole
Monday, January 21, 2008
Vacation
I mentioned in a previous post that Doug was given a week of vacation from his chemo drugs? Last Monday Doug's doctor wanted to wait until he evaluated the results of the thyroid numbers before resuming the chemo. Doug's vacation was extended. He also had his physical therapy assessment with therapy to begin this coming week.
Saturday night the vacation from chemo ended. During this extended vacation and while on the fewest drugs to date, we had some false expectations that Doug would really be able to feel greater energy. We were, however, grateful for the few days Doug did feel a tiny “spark”.
The numbers of his last blood panel showed that his thyroid was in the normal range so that is not the lack-of-energy issue. We did learn that his white count was high enough so that with normal percautions we could get out of the house for short periods of time. That was special for both of us.
You know how after you’ve been on a 2-week vacation you dread going back to work and your daily activities? Doug was dreading the thought of having to return to his medical routine. He told me that at the same time he was eager to take the medications so he can get all of this behind him as soon as possible. For a change he'd rather be working than on a vacation!
Sunday he watched New England beat San Diego in the NFL play off game. I went to spend some time with my Mom. I came back in time to fix our evening meal and cheer for the Packers, not because I’m one of their life-long fans but because some of my extended family members are.
Just watching those adult men skid on the icy field in temperatures with a wind-chill factor in the minus 20 + range made me know that with determination men can do anything they put their mind too!
Doug is determined.
Kilcher stadium is full of your prayers, cards, and memories revisited in telephone conversations with “old” high school and college classmates. He’s being cheered on by former neighbors, former church members and his former students and faculty at the Seminary. He appreciates the support he feels from his professional colleagues while he’s “on the bench”. He feels the love of family and friends and from individuals he didn’t realize even knew his name.
Doug will win this challenge.
~Carole
Saturday night the vacation from chemo ended. During this extended vacation and while on the fewest drugs to date, we had some false expectations that Doug would really be able to feel greater energy. We were, however, grateful for the few days Doug did feel a tiny “spark”.
The numbers of his last blood panel showed that his thyroid was in the normal range so that is not the lack-of-energy issue. We did learn that his white count was high enough so that with normal percautions we could get out of the house for short periods of time. That was special for both of us.
You know how after you’ve been on a 2-week vacation you dread going back to work and your daily activities? Doug was dreading the thought of having to return to his medical routine. He told me that at the same time he was eager to take the medications so he can get all of this behind him as soon as possible. For a change he'd rather be working than on a vacation!
Sunday he watched New England beat San Diego in the NFL play off game. I went to spend some time with my Mom. I came back in time to fix our evening meal and cheer for the Packers, not because I’m one of their life-long fans but because some of my extended family members are.
Just watching those adult men skid on the icy field in temperatures with a wind-chill factor in the minus 20 + range made me know that with determination men can do anything they put their mind too!
Doug is determined.
Kilcher stadium is full of your prayers, cards, and memories revisited in telephone conversations with “old” high school and college classmates. He’s being cheered on by former neighbors, former church members and his former students and faculty at the Seminary. He appreciates the support he feels from his professional colleagues while he’s “on the bench”. He feels the love of family and friends and from individuals he didn’t realize even knew his name.
Doug will win this challenge.
~Carole
Tuesday, January 15, 2008
Back to Work
Doug got up and dressed in his professional clothes this morning. After breakfast he packed up his brief case and was determined to go to his office for “a couple of hours”. His caregiver did not encourage such a trip and even offered to drive him to and from. Doug, however, was determined to go by himself.
Letting go for me is not easy but for him his being controlled all the time isn’t easy either. I know that Doug’s work is as much an avocation as a vocation. It has been way too long for him to be away. He has missed his office family.
Soooooooooo I got my camera ready to take his picture as he got into his car. Instead he sat down in a chair. His mind was willing but his flesh was still weak.
For those of you who read my blog and are not acquainted with Doug’s work, he is one of the 4 administrators of the Texas Conference, the Adventist’s denomination’s state headquarters. The office is located about 20 minutes from where we live.
As a denominational headquarters it oversees the work of Adventist churches, pastors, and Adventist-run elementary and high schools. The geographical territory does not include the Texas pan handle and parts of West Texas. There are 40 thousands members of the Adventist church in Texas being ministered to in many languages by 200 pastors. The Conference also includes 22 schools and assists in the credentialing and training of their principals and teachers.
The 4 administrators meet regularly each week in what they call the “Officers Meeting”. Doug takes the minutes for those meetings.
It was advised that several of the employees at the Conference office were coughing, sneezing and blowing their noses so perhaps Doug would want to reconsider coming into the office for fear he’d catch something.
As it ended up Doug did go to work today. With the help of the Communication Director the free video conferencing system [referred to earlier in my blog] brought the four all together. Doug was in his home office and the three others 20 minutes away at the Conference office.
I could hear laughter ringing throughout the house. Doug was working but at the same time having fun with his colleagues. He did take minutes of the meeting with his fellow officers. He did dictate them to his Administrative Assistant.
When all was said and done, Doug saved energy—his own and his car’s--and lightened his carbon footprint.
~Carole
Letting go for me is not easy but for him his being controlled all the time isn’t easy either. I know that Doug’s work is as much an avocation as a vocation. It has been way too long for him to be away. He has missed his office family.
Soooooooooo I got my camera ready to take his picture as he got into his car. Instead he sat down in a chair. His mind was willing but his flesh was still weak.
For those of you who read my blog and are not acquainted with Doug’s work, he is one of the 4 administrators of the Texas Conference, the Adventist’s denomination’s state headquarters. The office is located about 20 minutes from where we live.
As a denominational headquarters it oversees the work of Adventist churches, pastors, and Adventist-run elementary and high schools. The geographical territory does not include the Texas pan handle and parts of West Texas. There are 40 thousands members of the Adventist church in Texas being ministered to in many languages by 200 pastors. The Conference also includes 22 schools and assists in the credentialing and training of their principals and teachers.
The 4 administrators meet regularly each week in what they call the “Officers Meeting”. Doug takes the minutes for those meetings.
It was advised that several of the employees at the Conference office were coughing, sneezing and blowing their noses so perhaps Doug would want to reconsider coming into the office for fear he’d catch something.
As it ended up Doug did go to work today. With the help of the Communication Director the free video conferencing system [referred to earlier in my blog] brought the four all together. Doug was in his home office and the three others 20 minutes away at the Conference office.
I could hear laughter ringing throughout the house. Doug was working but at the same time having fun with his colleagues. He did take minutes of the meeting with his fellow officers. He did dictate them to his Administrative Assistant.
When all was said and done, Doug saved energy—his own and his car’s--and lightened his carbon footprint.
~Carole
Monday, January 14, 2008
Weight Watchers
Last Monday Dr. Mandell gave Doug what he called a “vacation” from the chemo drugs. He also changed the prescription we use if Doug gets any pain during the day. While Doug is not eager to stop the progress of his treatment he did look forward to getting a reprieve. The physician’s goal for stopping chemo for a week was to try to enhance Doug's level of energy and quality of life. Doug was also told he needs to regain some of his lost weight which will make him feel stronger. We went home to eat lots of calories.
Each day this past week we'd wake up hoping that something BIG was going to change in how Doug felt—especially as it concerned reduction in his fatigue and increase in his level of stamina.
I cooked up all sorts of calorie laden meals. I did good things like juiced vegetables to counteract his anemia and bolster his immune system. I also bought things at the grocery store that I haven’t allowed in the house since I became a card carrying, lifetime member of Weight Watchers.
Doug ate three big-for-him meals each day as well as one or two smoothies I crammed everything into. I’m talking some type of protein such as Ensure plus protein or Boost with protein or tofu or whey. Sometimes I combined several proteins within the same smoothie. I also added flaxseed oil, wheat germ, half-n-half or whole milk, frozen or fresh fruit. I always added banana and topped it off with ice cream or sherbet depending on the flavor because cold smoothies taste better!
Today at our weekly visit the medical assistant put Doug on their scales as per usual. He lost another pound. She didn’t weigh me but I weighed myself this morning. I gained 5 pounds!
So today one of our topics of discussion with the nurse practitioner and later with Dr. Mandell was why isn't Doug gaining when his appitite is good? They gave us all sorts of suggestions not the least of which is that Doug has tremors and that his shivers eat up calories. That is why he is weak.
Doug told them he felt his shaking is due to one of the medications for pain. Regardless of the reason he has been told he must eat more food and more calories.
I asked if in the blood chemistry they had ever checked his thyroid levels. They said that was a good question and the answer was no they hadn’t.
That got them to thinking that since Doug’s appetite didn’t increase even when on two different steroids at the same time there could be a second thing going on within his system. They will look at the blood chemistry this week with his thyroid in mind.
We won’t get the results back from the blood test until later this week. If it is his thyroid, according to them it will be easy to “fix". If it is his thyroid I’m going to take the credit for identifying this part of his dis-ease and sign up for medical school!!!
Doug did walk around the circle that is our cul-de-sac Friday and Saturday and on Sunday we went the length of one block. Today after Doug's doctor appointment we stopped at the grocery store to get buttermilk and anything else that looked good and fattening to Doug. They are ordering some physical therapy for him and not returning him to the chemo drugs until they review his blood results mid-week.
I came home and unearthed my Weight Watcher’s notes. I must use self-control and not eat everything I fix for him. Today at the grocery store I purposely didn’t buy the flavor of ice cream I like best.
~Carole
Each day this past week we'd wake up hoping that something BIG was going to change in how Doug felt—especially as it concerned reduction in his fatigue and increase in his level of stamina.
I cooked up all sorts of calorie laden meals. I did good things like juiced vegetables to counteract his anemia and bolster his immune system. I also bought things at the grocery store that I haven’t allowed in the house since I became a card carrying, lifetime member of Weight Watchers.
Doug ate three big-for-him meals each day as well as one or two smoothies I crammed everything into. I’m talking some type of protein such as Ensure plus protein or Boost with protein or tofu or whey. Sometimes I combined several proteins within the same smoothie. I also added flaxseed oil, wheat germ, half-n-half or whole milk, frozen or fresh fruit. I always added banana and topped it off with ice cream or sherbet depending on the flavor because cold smoothies taste better!
Today at our weekly visit the medical assistant put Doug on their scales as per usual. He lost another pound. She didn’t weigh me but I weighed myself this morning. I gained 5 pounds!
So today one of our topics of discussion with the nurse practitioner and later with Dr. Mandell was why isn't Doug gaining when his appitite is good? They gave us all sorts of suggestions not the least of which is that Doug has tremors and that his shivers eat up calories. That is why he is weak.
Doug told them he felt his shaking is due to one of the medications for pain. Regardless of the reason he has been told he must eat more food and more calories.
I asked if in the blood chemistry they had ever checked his thyroid levels. They said that was a good question and the answer was no they hadn’t.
That got them to thinking that since Doug’s appetite didn’t increase even when on two different steroids at the same time there could be a second thing going on within his system. They will look at the blood chemistry this week with his thyroid in mind.
We won’t get the results back from the blood test until later this week. If it is his thyroid, according to them it will be easy to “fix". If it is his thyroid I’m going to take the credit for identifying this part of his dis-ease and sign up for medical school!!!
Doug did walk around the circle that is our cul-de-sac Friday and Saturday and on Sunday we went the length of one block. Today after Doug's doctor appointment we stopped at the grocery store to get buttermilk and anything else that looked good and fattening to Doug. They are ordering some physical therapy for him and not returning him to the chemo drugs until they review his blood results mid-week.
I came home and unearthed my Weight Watcher’s notes. I must use self-control and not eat everything I fix for him. Today at the grocery store I purposely didn’t buy the flavor of ice cream I like best.
~Carole
Friday, January 11, 2008
The Caregiver
Some of you have asked, “What are you [Carole] doing to take care of the caregiver?” I thought I should let you in on one of the things I do. At least once a month I get a message. I don’t take this spousal benefit on Doug’s insurance plan for granted.
This past month the woman I go to moved her studio from the country to the city. If she was not such a good masseuse I would look closer to home for another therapist. The new studio is where I’ve never been before. The issue with that is that I have no sense of direction. None.
I grew up in rural township with no even one stop light. In the years since I’ve moved from my hometown there are now two intersections that have installed one stop light each. That’s a big deal!
After Doug graduated from seminary we moved to Los Angeles. I was in shock. I couldn’t even tell where one city ended and the other began. There were way too many stop lights and, worst of all, freeways leading in all sorts of directions. At the time we didn’t have children so I will admit that I became co-dependent on Doug for transportation.
I’m a visual learner (and that doesn’t include maps!). If you tell me to go North, South, East or West, I have not a clue what to do even when the sun is setting. If you say go 4 miles and turn right by the white church across from McDonalds, I’m with you.
I also learned that I have less anxiety when traveling on side streets rather than on major freeways. I’ve gotten by driving that way everywhere we’ve lived that has required freeway driving. Today we live on the fringe of one of the largest metropolitan areas in the United States. I've managed to avoid freeway driving by staying with the familiar and comfortable for me.
I’ve only had my GPS driving companion since Doug was diagnosed with cancer. I'm still not sure just how much I can really venture out and turst that voice within it. I am still more comfortable with what I'm use to using--a computer map program.
So in preparation for my massage today I used the advanced options for dummies on the computer map program and saw the new studio was accessable via the back roads and was not far from a large shopping mall with which I had geographic familiarity! So map program with turn-by-turn instruction in hand I headed out into areas with which I was familiar.
Using the 'back way' to my massage I did drive past people who probably didn’t have breakfast this morning much less would not have even considered been able to have the healing hands of a massage therapist placed on them. You don't notice people like that as much going 65 mph along a freeway.
On the way home from my appointment (which I made on time and felt better for), I wanted to go the back roads the way I had come. That was wishful thinking on my part. I had not done reverse directions on the map program.
Even though I was probably only a few block from the massage studio I made one wrong turn. One mistake. I was lost.
So I pulled into a parking spot and turned on my GPS. I went into my “favorites” and selected “home”. I knew that, like it or not, I had to do what the voice inside told me to do. It was now a matter of faith and trust in her to get me back home.
Why am I admitting this? Because what I learned today was the need to trust and have faith in a voice of a person that I can not see. It’s a voice of a woman I have never met. She gave me no choice. I had to merge onto a busy freeway. In the end it was a much shorter, direct route.
Doug and I are on a journey. We have never been this way before. Some days it seems we are lost. But we have made a choice to trust and have faith in God’s Precious Son, the ultimate Caregiver whom we can not see but a voice we’ve become familiar with in the past. We believe He is guiding our doctors and the others with whom we are seeking medical counsel. With multiple myeloma there is no other way.
At least that is how we see it from our perspective.
~Carole
This past month the woman I go to moved her studio from the country to the city. If she was not such a good masseuse I would look closer to home for another therapist. The new studio is where I’ve never been before. The issue with that is that I have no sense of direction. None.
I grew up in rural township with no even one stop light. In the years since I’ve moved from my hometown there are now two intersections that have installed one stop light each. That’s a big deal!
After Doug graduated from seminary we moved to Los Angeles. I was in shock. I couldn’t even tell where one city ended and the other began. There were way too many stop lights and, worst of all, freeways leading in all sorts of directions. At the time we didn’t have children so I will admit that I became co-dependent on Doug for transportation.
I’m a visual learner (and that doesn’t include maps!). If you tell me to go North, South, East or West, I have not a clue what to do even when the sun is setting. If you say go 4 miles and turn right by the white church across from McDonalds, I’m with you.
I also learned that I have less anxiety when traveling on side streets rather than on major freeways. I’ve gotten by driving that way everywhere we’ve lived that has required freeway driving. Today we live on the fringe of one of the largest metropolitan areas in the United States. I've managed to avoid freeway driving by staying with the familiar and comfortable for me.
I’ve only had my GPS driving companion since Doug was diagnosed with cancer. I'm still not sure just how much I can really venture out and turst that voice within it. I am still more comfortable with what I'm use to using--a computer map program.
So in preparation for my massage today I used the advanced options for dummies on the computer map program and saw the new studio was accessable via the back roads and was not far from a large shopping mall with which I had geographic familiarity! So map program with turn-by-turn instruction in hand I headed out into areas with which I was familiar.
Using the 'back way' to my massage I did drive past people who probably didn’t have breakfast this morning much less would not have even considered been able to have the healing hands of a massage therapist placed on them. You don't notice people like that as much going 65 mph along a freeway.
On the way home from my appointment (which I made on time and felt better for), I wanted to go the back roads the way I had come. That was wishful thinking on my part. I had not done reverse directions on the map program.
Even though I was probably only a few block from the massage studio I made one wrong turn. One mistake. I was lost.
So I pulled into a parking spot and turned on my GPS. I went into my “favorites” and selected “home”. I knew that, like it or not, I had to do what the voice inside told me to do. It was now a matter of faith and trust in her to get me back home.
Why am I admitting this? Because what I learned today was the need to trust and have faith in a voice of a person that I can not see. It’s a voice of a woman I have never met. She gave me no choice. I had to merge onto a busy freeway. In the end it was a much shorter, direct route.
Doug and I are on a journey. We have never been this way before. Some days it seems we are lost. But we have made a choice to trust and have faith in God’s Precious Son, the ultimate Caregiver whom we can not see but a voice we’ve become familiar with in the past. We believe He is guiding our doctors and the others with whom we are seeking medical counsel. With multiple myeloma there is no other way.
At least that is how we see it from our perspective.
~Carole
Saturday, January 5, 2008
New
(2008, that's new)
It’s been awhile since I’ve blogged. Some weeks are easier than others to find the right words. I know many of you look frequently for something new. So here it is.
Yesterday I took Doug to have another X-ray of his lungs. I picked up a copy of the films to take to the doctor on Monday but also for the home health RN to see. He came today, read them, and sees little evidence of pneumonia. For that we are very encouraged. I could have told you that too but it is more impressive from a R.N./D.C. I was shown the X-rays taken in the ER during our last visit. The contrast is amazing.
The measure of Doug's O2 level was 94%, was reduced when walking but rebounded at a good rate when he sat down again. We must be dealing the a medication side effect or anemia as fatigue and lack of energy are the two biggest battles we've been fighting this week. Doug stays in bed most of the day and all night.
We had a slight fever scare last evening. Ice makers on refrigerators are another blessing not to be taken forgranted during times like these. This morning his temp. was in the normal range. We see the hematologist/oncologist on Monday and hope to find some encouragement related to his lack of energy.
Kevin left Wednesday after checking off the last thing on his to do list for us. We were sad to see him go but glad he felt we were stable enough for him to return to his work and life in New York. We will never be as far away from him again either. Let me explain.
We have a new Livie!Cam by Creative that, according to the packaging material, allows us to have “life like video, clear voice and fun effects” over the Internet. I’m not promoting product as there are many out there. I’m just sharing what we have. Then Kevin downloaded the free version of “SightSpeed” from http://www.sightspeed.com/ Once we purchased the camera everything else was free!! Yes, we could pay more and do more but we just needed the basics.
Doug’s home office (that I get to share) is a desktop P.C. that uses a Windows operating system. The video camera on our computer is one that just fits over the monitor and is hooked into a USB port. The speaker is built into the camera. The whole deal is about the size of the palm of my hand. The “eye” of the camera can rotate up or down.
Kevin had his Mac Book laptop along with him. It has a built in camera and microphone. When we were all set up, Kevin and Doug sat in the family room and we took our first test-drive with me at the office computer in another area of our home. It was awesome! It was seeing and believing first hand.
The real test came the morning after Kevin left. He called from his apartment in New York to tell us he had arrived home safely and said, “Let’s video conference to see how this works at a distance.” We hung up the phone and went into the computer. Clicked on the SightSpeed icon short cut Kevin had set up for us and clicked on his name in our “friends” list. It rings with a sound similar to a telephone on our end. When Kevin picked up in New York City we could see him and hear him loud and clear with no distortion. Laura was busy in the kitchen. She came to say hi. Doug sat in the computer chair and I was standing behind him. The kids could see both of us and we both of them. We also got to see our “grand-cat”, Rusty, when Kevin held him right up to his camera. That is a very NEW experience being able to drop into our kids home and not have to travel.
Because the lap top is portable, Kevin took us on a tour of their apartment. We could even see their view of the city from their picture window.
Now many of you reading this blog will think this is no big deal. Some of you have been video conferencing over the Internet with your kids and grandkids for free since you learned you could. I’ve done it before too but there was so much distortion and delay that it wasn’t worth my time. I was use to the ones at the Intermediate school districts, in public schools or the State of Nebraska's Communication department and the Adventist Distance Learning systems, ones I’d used professionally. They cost a lot just to “rent” time. It really wasn't a fair comparison. As technology has changed so has the quality for home-to-home and office-to-office sharing. We do have digital broad band connection to the Internet here at home. I realize that is an important variable.
As we begin a new year Doug and I have some new resolutions. We have resolved to keep our family close even though the children live on opposite coasts. Our new computer camera will certainly assist with that resolve. We are going to work with Kristi to get hers set up now that we know how it all works. We also hope that in spite of his compromised immune system Doug might be able to return to work this way if only by video and teleconferencing. We are determined to not let cancer control us but in every way we are able with medical science’s assistance and God’s help, control the cancer.
To that end we wish you and yours a happy New year.
Our faith is strong. That is NOT new.
~Carole
It’s been awhile since I’ve blogged. Some weeks are easier than others to find the right words. I know many of you look frequently for something new. So here it is.
Yesterday I took Doug to have another X-ray of his lungs. I picked up a copy of the films to take to the doctor on Monday but also for the home health RN to see. He came today, read them, and sees little evidence of pneumonia. For that we are very encouraged. I could have told you that too but it is more impressive from a R.N./D.C. I was shown the X-rays taken in the ER during our last visit. The contrast is amazing.
The measure of Doug's O2 level was 94%, was reduced when walking but rebounded at a good rate when he sat down again. We must be dealing the a medication side effect or anemia as fatigue and lack of energy are the two biggest battles we've been fighting this week. Doug stays in bed most of the day and all night.
We had a slight fever scare last evening. Ice makers on refrigerators are another blessing not to be taken forgranted during times like these. This morning his temp. was in the normal range. We see the hematologist/oncologist on Monday and hope to find some encouragement related to his lack of energy.
Kevin left Wednesday after checking off the last thing on his to do list for us. We were sad to see him go but glad he felt we were stable enough for him to return to his work and life in New York. We will never be as far away from him again either. Let me explain.
We have a new Livie!Cam by Creative that, according to the packaging material, allows us to have “life like video, clear voice and fun effects” over the Internet. I’m not promoting product as there are many out there. I’m just sharing what we have. Then Kevin downloaded the free version of “SightSpeed” from http://www.sightspeed.com/ Once we purchased the camera everything else was free!! Yes, we could pay more and do more but we just needed the basics.
Doug’s home office (that I get to share) is a desktop P.C. that uses a Windows operating system. The video camera on our computer is one that just fits over the monitor and is hooked into a USB port. The speaker is built into the camera. The whole deal is about the size of the palm of my hand. The “eye” of the camera can rotate up or down.
Kevin had his Mac Book laptop along with him. It has a built in camera and microphone. When we were all set up, Kevin and Doug sat in the family room and we took our first test-drive with me at the office computer in another area of our home. It was awesome! It was seeing and believing first hand.
The real test came the morning after Kevin left. He called from his apartment in New York to tell us he had arrived home safely and said, “Let’s video conference to see how this works at a distance.” We hung up the phone and went into the computer. Clicked on the SightSpeed icon short cut Kevin had set up for us and clicked on his name in our “friends” list. It rings with a sound similar to a telephone on our end. When Kevin picked up in New York City we could see him and hear him loud and clear with no distortion. Laura was busy in the kitchen. She came to say hi. Doug sat in the computer chair and I was standing behind him. The kids could see both of us and we both of them. We also got to see our “grand-cat”, Rusty, when Kevin held him right up to his camera. That is a very NEW experience being able to drop into our kids home and not have to travel.
Because the lap top is portable, Kevin took us on a tour of their apartment. We could even see their view of the city from their picture window.
Now many of you reading this blog will think this is no big deal. Some of you have been video conferencing over the Internet with your kids and grandkids for free since you learned you could. I’ve done it before too but there was so much distortion and delay that it wasn’t worth my time. I was use to the ones at the Intermediate school districts, in public schools or the State of Nebraska's Communication department and the Adventist Distance Learning systems, ones I’d used professionally. They cost a lot just to “rent” time. It really wasn't a fair comparison. As technology has changed so has the quality for home-to-home and office-to-office sharing. We do have digital broad band connection to the Internet here at home. I realize that is an important variable.
As we begin a new year Doug and I have some new resolutions. We have resolved to keep our family close even though the children live on opposite coasts. Our new computer camera will certainly assist with that resolve. We are going to work with Kristi to get hers set up now that we know how it all works. We also hope that in spite of his compromised immune system Doug might be able to return to work this way if only by video and teleconferencing. We are determined to not let cancer control us but in every way we are able with medical science’s assistance and God’s help, control the cancer.
To that end we wish you and yours a happy New year.
Our faith is strong. That is NOT new.
~Carole
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