Yesterday, July 23, Doug had an appointment in Dallas at the clinic. We were scheduled to meet with Dr. Collins. He asked Doug how he was feeling and if he had any questions. We had written down three questions during the week.
After Dr. Collins was satisfied that we were satisfied he calmly said he'd be making a call to our referring doctor. The transplant was, in his opinion, a success--even if it took longer than he/we had anticipated. He told us to make an appointment with Dr. Mandell next week. He is the hematologist/oncologist in Fort Worth who had referred us to UTSWMC.
Doug and I both looked at one another and Doug said, "Does that mean I'm done here?"
Dr. Collins said he had not seen the numbers from the labs drawn an hour before but after today we would be followed by Dr. Mandell. Doug thanked Dr. Collins, his staff, and God for giving him back his life. He said, "I know I wouldn't be here today otherwise."
Dr. Collins is a humble man and said that he was pleased Doug was pleased. He noted that research in Myeloma is rapid and one day they hope to be able to give a pill and not have to use the toxic chemo.
When the labs came back Dr. Collins reviewed them and felt Doug needed whole blood. His red counts, hemoglobin, hematocrit were the only counts that were below normal.
Doug will still have to have his Neo Star taken out sometime but that will be done outpatient by a surgeon in Dallas. With Doug's release our mileage (think price at the pump) has been cut from approx. 100 miles round trip to the Dallas clinic to approx. 24 miles round trip to the Ft. Worth clinic. This is an added plus as we begin the next phase of living with cancer that for now has been abated. PTL!
I'll keep you posted from time-to-time because I journal this experience for us more than for you. It is interesting how much one forgets--especially the bad parts of our experience. That is Mercy with a capitol M.
~Carole
Thursday, July 24, 2008
Sunday, July 20, 2008
Home
July 20th is a milestone for Doug. We are home and will sleep in our own bed for the first time in 2 1/2 months.
His treatment is not over, he is suffering indescribable fatigue, he has lost a lot of weight and his immune system is still compromised however we are both so glad to be home those things seem minor.
We covet your continued prayer support as we begin the next chapter of this journey.
~Carole
His treatment is not over, he is suffering indescribable fatigue, he has lost a lot of weight and his immune system is still compromised however we are both so glad to be home those things seem minor.
We covet your continued prayer support as we begin the next chapter of this journey.
~Carole
Saturday, July 19, 2008
This Week's Highlights
There have been a few highlights this week regarding Doug’s progress. His beard is growing back. Not having to shave has been one of the side benefits of chemo (possibly the only other than ridding him of cancer).
Doug didn’t notice the “peach fuzz” on his face as fast as I did when I kissed him! He has been out of the habit of shaving now for several months. If hair on the chinny-chin-chin is growing can fuzz on his head be far behind?
He didn’t loose every hair on his head nor did he choose to shave his head. His challenge now will be to combine his “comb over” with his new hair growth which will no doubt be of an entirely different texture than before cancer. Other cancer survivors have told us that their hair not only came in at different texture but also a different color. I’ll keep you posted as to whether he becomes a blonde, brunette, or red head!
The last four days he has wanted to walk on the treadmill. Now to some of you this would be no big deal. For one who has been constantly in bed (and still feels better down than upright) this is a big deal. It provides him an even surface and something besides me to hang onto which I am sure makes him feel more independent.
On Friday Angela, the Physician’s Assistant, said that the numbers are exactly as they expect them to be and even hinted that they may take his NeoStar catheter out of his heart chamber in the next couple of weeks. That will make his showers much more convenient as now he has to have me help cover (think water proof) his dressing. We use Press and Seal™ the same product that I use in the kitchen to cover things without lids. Then I double seal the area with waterproof tape all the way around the dressing. Nurses change the sterile dressing once per week.
Finally after receiving IV fluids Friday Doug was given the longest time between appointments to the clinic. We’ve graduated from going every day at 8:30 to three times a week to two times a week. At his next appoint it will be once a week. They keep weaning him away from them back to his regular oncologist. This allows us to put our lives at home into our new normal.
Angela also told us something interesting that we had not heard before. We were talking about Doug’s being a “late adopter” wherein the stem cells didn’t take off as rapidly as is normally seen nor did his stem cells start making his own blood as rapidly as WE thought that they should be making it. Angela said, “We know that it takes 14 days from when the stem cells are infused until they start producing any blood at all. There is nothing science can do about speeding that up because that is how God made us.”
We have been so fortunate to be surrounded by fellow Christians in this hospital and at the clinic as well as to have so many Christians of varing persuasions of faith praying for both of us. You are the reason we are feeling so humbled and blessed.
~Carole
Doug didn’t notice the “peach fuzz” on his face as fast as I did when I kissed him! He has been out of the habit of shaving now for several months. If hair on the chinny-chin-chin is growing can fuzz on his head be far behind?
He didn’t loose every hair on his head nor did he choose to shave his head. His challenge now will be to combine his “comb over” with his new hair growth which will no doubt be of an entirely different texture than before cancer. Other cancer survivors have told us that their hair not only came in at different texture but also a different color. I’ll keep you posted as to whether he becomes a blonde, brunette, or red head!
The last four days he has wanted to walk on the treadmill. Now to some of you this would be no big deal. For one who has been constantly in bed (and still feels better down than upright) this is a big deal. It provides him an even surface and something besides me to hang onto which I am sure makes him feel more independent.
On Friday Angela, the Physician’s Assistant, said that the numbers are exactly as they expect them to be and even hinted that they may take his NeoStar catheter out of his heart chamber in the next couple of weeks. That will make his showers much more convenient as now he has to have me help cover (think water proof) his dressing. We use Press and Seal™ the same product that I use in the kitchen to cover things without lids. Then I double seal the area with waterproof tape all the way around the dressing. Nurses change the sterile dressing once per week.
Finally after receiving IV fluids Friday Doug was given the longest time between appointments to the clinic. We’ve graduated from going every day at 8:30 to three times a week to two times a week. At his next appoint it will be once a week. They keep weaning him away from them back to his regular oncologist. This allows us to put our lives at home into our new normal.
Angela also told us something interesting that we had not heard before. We were talking about Doug’s being a “late adopter” wherein the stem cells didn’t take off as rapidly as is normally seen nor did his stem cells start making his own blood as rapidly as WE thought that they should be making it. Angela said, “We know that it takes 14 days from when the stem cells are infused until they start producing any blood at all. There is nothing science can do about speeding that up because that is how God made us.”
We have been so fortunate to be surrounded by fellow Christians in this hospital and at the clinic as well as to have so many Christians of varing persuasions of faith praying for both of us. You are the reason we are feeling so humbled and blessed.
~Carole
Thursday, July 10, 2008
Good News
Usually when I don’t blog it means that there is nothing to blog about! However on Tuesday we had some real good news I wanted to share with all of you. When I had time to blog it became obvious to me that my computer had acquired some form of “cancer”. It first started out as a scare tactic for me to purchase “AntiSpywareMaster” which I tried to ignore. Since this is Doug’s work computer I called tech support at his office. Even with a pop up blocker on the messages kept coming. Long story short someone from the office brought another computer and took the sick one back for evaluation.
Besides keeping in touch with the outer world we use the computer everyday to go online to a password protected site where we can view and track Doug’s medical records, check to see when our next appointment is, request medication refills and even send messages to the doctor or his staff. I am grateful to Doug’s staff at his office for not making me panic too long!
The first good news Tuesday was regarding his CBC and 24 hour urine collection report. While we get access to all of that daily it helps to understand it from a historical perspective. When first diagnosed the M-Spike that shows the level of protein in Doug’s urine was some of the highest the Fort Worth oncologist had seen.
While the numbers are all I can show you I will have to have someone else explain the last symbol I don’t know how to compute much less grasp metric symbols totally.
At diagnosis the urine protein was 16,208 mg/24 (and above the 4 a small degree symbol).
Before transplant the number was 574 mg/24 small degree symbol.
Tuesday we were given the lab report with no apparent M-spike. (Praise the Lord)
While they cannot be certain, this indicates that for Doug’s particular brand of cancer the majority of (if not all) myeloma cancer cells were eliminated from Doug’s body. When we read back to lab reports from when he was first diagnosed and see the number of tumors in his blood/bone marrow and M-Spike compared to Tuesday we are jumping for joy—well not jumping but you get the picture.
Now we are working on nutrition and keeping food on Doug’s tummy—bland with lots of calories and protein. (I’ve kept lots of food on my tummy while none has stuck to Doug’s yet!!!) Because he has been bed-ridden for so long we are also working on exercises. He is weak and will feel fatigue for some time. He is battling low blood pressure. Somehow these challenges don’t seem as difficult now with the good report.
We still have to be cautious of bacteria etc but we are of good courage chomping at the bit to get use to our “new normal” around the house and at his workplace. As I write friends and family are also coping with cancer, high blood pressure, MS and Lou Garigs (sp) disease. All but one are younger than Doug.
Last night I attended praise and worship service at the church closest to us. I have passed it many times. Its name attracted my attention: The Cathedral of Hope. Its mission statement says it well: “We are a church that believes in relentless compassion, radical inclusion and extravagant grace.” There were about 200 people there Wed. with more than 1,000 in two services on Sunday. I knew all the songs and it was good to sing them again as doing so while watching a church worship on TV or streaming version online on our computer doesn’t have the same impact on me as worshiping in person with others. The one unique feature in the rack in front of the pew was a small box of tissue. Music touches my soul so I was glad they were there.
It was good to be among Christians praising God and praying for peace for those on like uncertain journeys.
~Carole
Besides keeping in touch with the outer world we use the computer everyday to go online to a password protected site where we can view and track Doug’s medical records, check to see when our next appointment is, request medication refills and even send messages to the doctor or his staff. I am grateful to Doug’s staff at his office for not making me panic too long!
The first good news Tuesday was regarding his CBC and 24 hour urine collection report. While we get access to all of that daily it helps to understand it from a historical perspective. When first diagnosed the M-Spike that shows the level of protein in Doug’s urine was some of the highest the Fort Worth oncologist had seen.
While the numbers are all I can show you I will have to have someone else explain the last symbol I don’t know how to compute much less grasp metric symbols totally.
At diagnosis the urine protein was 16,208 mg/24 (and above the 4 a small degree symbol).
Before transplant the number was 574 mg/24 small degree symbol.
Tuesday we were given the lab report with no apparent M-spike. (Praise the Lord)
While they cannot be certain, this indicates that for Doug’s particular brand of cancer the majority of (if not all) myeloma cancer cells were eliminated from Doug’s body. When we read back to lab reports from when he was first diagnosed and see the number of tumors in his blood/bone marrow and M-Spike compared to Tuesday we are jumping for joy—well not jumping but you get the picture.
Now we are working on nutrition and keeping food on Doug’s tummy—bland with lots of calories and protein. (I’ve kept lots of food on my tummy while none has stuck to Doug’s yet!!!) Because he has been bed-ridden for so long we are also working on exercises. He is weak and will feel fatigue for some time. He is battling low blood pressure. Somehow these challenges don’t seem as difficult now with the good report.
We still have to be cautious of bacteria etc but we are of good courage chomping at the bit to get use to our “new normal” around the house and at his workplace. As I write friends and family are also coping with cancer, high blood pressure, MS and Lou Garigs (sp) disease. All but one are younger than Doug.
Last night I attended praise and worship service at the church closest to us. I have passed it many times. Its name attracted my attention: The Cathedral of Hope. Its mission statement says it well: “We are a church that believes in relentless compassion, radical inclusion and extravagant grace.” There were about 200 people there Wed. with more than 1,000 in two services on Sunday. I knew all the songs and it was good to sing them again as doing so while watching a church worship on TV or streaming version online on our computer doesn’t have the same impact on me as worshiping in person with others. The one unique feature in the rack in front of the pew was a small box of tissue. Music touches my soul so I was glad they were there.
It was good to be among Christians praising God and praying for peace for those on like uncertain journeys.
~Carole
Wednesday, July 2, 2008
Blood
The rocket metaphor I have used in the past recently took on new meaning.
Thursday, June 26, Kevin flew in from New York. At clinic that day Doug’s physician assistant announced that the next day, June 27, Doug’s stem cells would get a boost. She said Dr. Collins had ordered another bag of Doug’s stem cells from the blood bank. This meant that we'd have to spend all Friday at the clinic.
As you'll recall blood cells are made in the marrow, the spongy center inside bones. Blood cells begin as stem cells. Stem cells become red cells (carry oxegen around the body), white cells (fight infection) and platelets (prevent bleeding or help stop bleeding after an injury) in the marrow.
Because 2 hours of fluids were required prior to stem cell infusion and another 2 hours after the infusion over the weekend Doug’s body revolted—not hurting any of the new stem cells but making for a very long (and stressful) weekend for all of us.
On Sunday I went to the clinic to see if I could bring Doug in for evaluation even though we did not have an appointment. Doug had "stumbled" in the night on his way back from the bathroom and I was more than a little concerned to have to wait for our appointment on Monday. This is not a walk-in clinic on weekends but they were kind enough to have me bring him. As it turned out Doug had very low blood pressure.
The Sunday physician’s assistant is different from the one we see regularly but we know him from our stay in the hospital. Jeff explained to us that Doug’s stem cells are not making his own blood in large enough quantity yet. That is why the boost of the addional stem cells. It can take up to three weeks before the new cells develop enough for Doug to feel the boost. He assured us it will happen.
The team sees patients’ response to the transplant as a bell curve. Doug just happens to be one of the slower-to-respond ones which, according to Dr. Collins, put Doug at the 15th percentile on the slower-to-recover side of the bell curve. That doesn’t mean the stem cells haven’t grafted. They have. It just means that the rocket sat on the launch pad longer than expected and he is not producing his own blood in sufficient volume yet. In our conference with Dr. Collins today he said he is not concerned but he wants to hear from Doug what Doug is experiencing.
I think a better metaphor for us from now on is a roller coaster. We were down and our breath was taken away but today we are heading back up looking forward. Doug asked Dr. Collins if he thought he (Doug) would be able to go back to work by August 1st even if it were only for one hour. Dr. Collins said he would expect that Doug would be able to do that if he kept good boundaries and listened to his body.
Today Doug had another blood transfusion. I wish I had kept track of the number of blood transfusions Doug has received. I did not. Now there have been so many I couldn’t even guess. When I think of all the people that we will never know that are literally keeping Doug alive by simply saying “yes” when asked if they are willing to give blood I am in awe. Watching how it all happens on the receiving end gives new meaning to the importance of being a blood doner. We can become numb to announcements of opportunities in our community to give.
Kevin left Monday morning. The last time he was here was at Christmas time. Doug had pneumonia and was hospitalized. Doug promised Kevin that the next time Kevin comes for a visit his Dad will be upright.
~Carole
Thursday, June 26, Kevin flew in from New York. At clinic that day Doug’s physician assistant announced that the next day, June 27, Doug’s stem cells would get a boost. She said Dr. Collins had ordered another bag of Doug’s stem cells from the blood bank. This meant that we'd have to spend all Friday at the clinic.
As you'll recall blood cells are made in the marrow, the spongy center inside bones. Blood cells begin as stem cells. Stem cells become red cells (carry oxegen around the body), white cells (fight infection) and platelets (prevent bleeding or help stop bleeding after an injury) in the marrow.
Because 2 hours of fluids were required prior to stem cell infusion and another 2 hours after the infusion over the weekend Doug’s body revolted—not hurting any of the new stem cells but making for a very long (and stressful) weekend for all of us.
On Sunday I went to the clinic to see if I could bring Doug in for evaluation even though we did not have an appointment. Doug had "stumbled" in the night on his way back from the bathroom and I was more than a little concerned to have to wait for our appointment on Monday. This is not a walk-in clinic on weekends but they were kind enough to have me bring him. As it turned out Doug had very low blood pressure.
The Sunday physician’s assistant is different from the one we see regularly but we know him from our stay in the hospital. Jeff explained to us that Doug’s stem cells are not making his own blood in large enough quantity yet. That is why the boost of the addional stem cells. It can take up to three weeks before the new cells develop enough for Doug to feel the boost. He assured us it will happen.
The team sees patients’ response to the transplant as a bell curve. Doug just happens to be one of the slower-to-respond ones which, according to Dr. Collins, put Doug at the 15th percentile on the slower-to-recover side of the bell curve. That doesn’t mean the stem cells haven’t grafted. They have. It just means that the rocket sat on the launch pad longer than expected and he is not producing his own blood in sufficient volume yet. In our conference with Dr. Collins today he said he is not concerned but he wants to hear from Doug what Doug is experiencing.
I think a better metaphor for us from now on is a roller coaster. We were down and our breath was taken away but today we are heading back up looking forward. Doug asked Dr. Collins if he thought he (Doug) would be able to go back to work by August 1st even if it were only for one hour. Dr. Collins said he would expect that Doug would be able to do that if he kept good boundaries and listened to his body.
Today Doug had another blood transfusion. I wish I had kept track of the number of blood transfusions Doug has received. I did not. Now there have been so many I couldn’t even guess. When I think of all the people that we will never know that are literally keeping Doug alive by simply saying “yes” when asked if they are willing to give blood I am in awe. Watching how it all happens on the receiving end gives new meaning to the importance of being a blood doner. We can become numb to announcements of opportunities in our community to give.
Kevin left Monday morning. The last time he was here was at Christmas time. Doug had pneumonia and was hospitalized. Doug promised Kevin that the next time Kevin comes for a visit his Dad will be upright.
~Carole
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