Doug had the abdominal ultrasound done this morning. We'll probably have to wait until the appointment Friday to get the results - unless something serious is found, in which case I hope we get a phone call.
He hasn't had any more dizzy spells, but he avoids standing up for more than a few minutes. I can see a slight yellowish cast to his skin now, but the whites of his eyes are still white. He is not having pain, but what he describes as a 'tight, lumpish' feeling in the upper abdomen. The blood tests did not indicate liver problems, so that makes me feel a bit better.
Waiting is hard. Doug and I both have learned to focus on staying calm, but it's not always easy.
Give all your worries and cares to God, for He
cares what happens to you. 1
Peter 5:7
Wednesday, February 29, 2012
Monday, February 27, 2012
Not feeling good
We came home from Texas two weeks early. Got home Friday, after two and a half days travel, 950 miles. Doug drove most of the way, including a day of high winds, in spite of feeling lousy. I can't seem to drive more than an hour on straight flat highways - I get real drowsy and would probably cause a wreck. So it was by God's grace that we got home safely.
The last couple of weeks, Doug has not been feeling good. A variety of symptoms, including dizzy spells and upper abdominal discomfort. At first we thought we'd be able to stay for our grandson's Air Force graduation, but as he got worse, we decided to head for home while we still could. Getting stuck in Texas with a medical crisis is not high on our agenda.
Today Doug saw our Family Nurse Practitioner. I really wanted him to get a good overall check, and not go to the oncologist just yet. Don't want that specialist tunnel vision when the symptoms are vague.
Blood work shows Doug is anemic - no surprise there. Blood pressure was 70/50. A lot of blood counts were low, some possibly due to chemo. The FNP lowered the dose of Coreg which should help the BP. She ordered an ultrasound of the abdomen which we will get Wed. So we don't know yet just what is going on.
Meanwhile we are very glad to be home, close to familiar doctors and friends. I am sad to miss Ryan's graduation, but our son will be going and promises to take photos.
Update: the oncology office called this afternoon. On the basis of the low blood counts and the way Doug is feeling, the oncologist wants to hold off on the Revlimid for one week and repeat the blood test in a week.
The last couple of weeks, Doug has not been feeling good. A variety of symptoms, including dizzy spells and upper abdominal discomfort. At first we thought we'd be able to stay for our grandson's Air Force graduation, but as he got worse, we decided to head for home while we still could. Getting stuck in Texas with a medical crisis is not high on our agenda.
Today Doug saw our Family Nurse Practitioner. I really wanted him to get a good overall check, and not go to the oncologist just yet. Don't want that specialist tunnel vision when the symptoms are vague.
Blood work shows Doug is anemic - no surprise there. Blood pressure was 70/50. A lot of blood counts were low, some possibly due to chemo. The FNP lowered the dose of Coreg which should help the BP. She ordered an ultrasound of the abdomen which we will get Wed. So we don't know yet just what is going on.
Meanwhile we are very glad to be home, close to familiar doctors and friends. I am sad to miss Ryan's graduation, but our son will be going and promises to take photos.
Update: the oncology office called this afternoon. On the basis of the low blood counts and the way Doug is feeling, the oncologist wants to hold off on the Revlimid for one week and repeat the blood test in a week.
Friday, February 3, 2012
Blood Counts Good
We are at our RV park near Hondo Texas. Doug had his monthly blood draw done a few days ago; we got results, and they are good. Some values are a bit high, some a bit low, but that's due to the chemo. His light chain numbers are right where we want to see them - whew. His BUN and Creatine are better than last month. He's been trying to eat low carb, but blew the diabetic diet at a Chinese buffet. It was during the one week a month when he is off Revlimid and has working taste buds, so he enjoyed it. He continues to tire easily, but that's what naps are for. We've been taking daily walks.
We've been enjoying meeting up with some friends here. This area is getting some much needed rain, but we've also had nice sunny days.
We are selling our big 5th wheel RV. We have a buyer already, so we are glad of that. We decided that since Doug needs to check in monthly with the doc, it doesn't make financial sense to come all the way down south and stay only a month or so. We'll sell the lot back to the Co-op.
We are 'cheating' with doctor's permission, and staying here to see our oldest grandson graduate from Air Force basic training March 9 at Lackland AFB. We're excited to be able to attend that.
I want to share this with you. It's from Max Lucado's 'UpWords':
"You have a God who hears you, the power of love behind you, the Holy Spirit within you, and all of heaven ahead of you. If you have the Shepherd, you have grace for every sin, direction for every turn, a candle for every corner, and an anchor for every storm. You have everything you need."
Love to all.
We've been enjoying meeting up with some friends here. This area is getting some much needed rain, but we've also had nice sunny days.
We are selling our big 5th wheel RV. We have a buyer already, so we are glad of that. We decided that since Doug needs to check in monthly with the doc, it doesn't make financial sense to come all the way down south and stay only a month or so. We'll sell the lot back to the Co-op.
We are 'cheating' with doctor's permission, and staying here to see our oldest grandson graduate from Air Force basic training March 9 at Lackland AFB. We're excited to be able to attend that.
I want to share this with you. It's from Max Lucado's 'UpWords':
"You have a God who hears you, the power of love behind you, the Holy Spirit within you, and all of heaven ahead of you. If you have the Shepherd, you have grace for every sin, direction for every turn, a candle for every corner, and an anchor for every storm. You have everything you need."
Love to all.
Thursday, January 19, 2012
BUN Up, need to drink more!
Today was Doug's Zometa infusion. Before every infusion, he gets a blood draw to check the kidney values (BUN and Creatinine), since the Zometa can be hard on kidneys. Today his BUN was 28. Last month it was 20, which is on the high end of normal. Creatinine was 1.4 today (high but stable for Doug). BUN is affected by hydration, or lack of.
So Dr. M ordered a reduction in the Zometa dose, and ordered it be given with one liter of fluid. Takes a long time for a liter to drip in.
Doug thinks he has been drinking a lot, but he takes small sips, so doesn't actually drink as much as he needs. Today the nurse got on his case, in a nice way. Told him he needs to 'guzzle' instead of sipping! Just what I had been telling him; but it has more effect coming from someone else. He's supposed to drink at least two liters a day, and three is even better.
Poor guy - he's hearing "don't eat that, eat this"; "drink more"; "exercise more" - yada yada yada. Can't blame him for putting his earbuds in!
We leave in the morning for Texas. This is our first time traveling without dogs in tow. We miss the dogs but sans dogs is much easier. Life is good.
Love to all.
From my "Jesus Calling" book:
"My Face is shining upon you, beaming out Peace that surpasses all understanding. You are surrounded by a sea of problems, but you are face to face with Me, your Peace. As long as you focus on Me, you are safe."
So Dr. M ordered a reduction in the Zometa dose, and ordered it be given with one liter of fluid. Takes a long time for a liter to drip in.
Doug thinks he has been drinking a lot, but he takes small sips, so doesn't actually drink as much as he needs. Today the nurse got on his case, in a nice way. Told him he needs to 'guzzle' instead of sipping! Just what I had been telling him; but it has more effect coming from someone else. He's supposed to drink at least two liters a day, and three is even better.
Poor guy - he's hearing "don't eat that, eat this"; "drink more"; "exercise more" - yada yada yada. Can't blame him for putting his earbuds in!
We leave in the morning for Texas. This is our first time traveling without dogs in tow. We miss the dogs but sans dogs is much easier. Life is good.
Love to all.
From my "Jesus Calling" book:
"My Face is shining upon you, beaming out Peace that surpasses all understanding. You are surrounded by a sea of problems, but you are face to face with Me, your Peace. As long as you focus on Me, you are safe."
Friday, January 13, 2012
"Officially Diabetic"
Doug's blood sugar has been rising slowly over the last few years. So a few days ago he went to our Family Nurse Practitioner for a repeat hemoglobin A1c test. (The cancer specialists have 'tunnel vision' like most specialists - they only look at one aspect of health.)
This most recent A1c test had a result of 7.4, which according to our FNP means that now Doug is "officially diabetic". His blood glucose was 144.
The dexamethasone is no doubt elevating the blood sugar. After consulting with physicians, the consensus is to control it with diet and exercise and not add any drugs right now. That seems to be a good sensible approach.
We can't blame it all on the dex -- for years Doug has followed a poor diet. Even suggestions and nagging by the wife hasn't had much effect. He eats everything a typical ten year old boy would like, and has always had an aversion to 'healthy stuff'. But now he isn't going to be able to get by with that. He's going to really try to eat better. Before the relapse pulled the rug from under us, we had started to count carbs and eat only the 'good carbs'. Now we have to get back to that.
The exercise part - during the months that Doug's hip pain was so intense, he could walk only very short distances, and so became sedentary. Now the hip pain is mostly gone, so he has started walking a little more each day. In addition to walking, we got an exercise band to use at home. Need to build up those muscles again.
Good news is that we are leaving next week for a visit to Texas, where we have a lot in a private RV community. Doug is looking forward to warmer weather. We'll stay about two months, then we need to head home to keep up with doctor visits.
The road on this part of the Myeloma Journey is relatively smooth, with only a bumpy part here and there.
Love to all.
"The essence of philosophy is that a man should so live that his happiness shall depend as little as possible on external things." Epictetus
This most recent A1c test had a result of 7.4, which according to our FNP means that now Doug is "officially diabetic". His blood glucose was 144.
The dexamethasone is no doubt elevating the blood sugar. After consulting with physicians, the consensus is to control it with diet and exercise and not add any drugs right now. That seems to be a good sensible approach.
We can't blame it all on the dex -- for years Doug has followed a poor diet. Even suggestions and nagging by the wife hasn't had much effect. He eats everything a typical ten year old boy would like, and has always had an aversion to 'healthy stuff'. But now he isn't going to be able to get by with that. He's going to really try to eat better. Before the relapse pulled the rug from under us, we had started to count carbs and eat only the 'good carbs'. Now we have to get back to that.
The exercise part - during the months that Doug's hip pain was so intense, he could walk only very short distances, and so became sedentary. Now the hip pain is mostly gone, so he has started walking a little more each day. In addition to walking, we got an exercise band to use at home. Need to build up those muscles again.
Good news is that we are leaving next week for a visit to Texas, where we have a lot in a private RV community. Doug is looking forward to warmer weather. We'll stay about two months, then we need to head home to keep up with doctor visits.
The road on this part of the Myeloma Journey is relatively smooth, with only a bumpy part here and there.
Love to all.
"The essence of philosophy is that a man should so live that his happiness shall depend as little as possible on external things." Epictetus
Wednesday, January 4, 2012
Great News
Today was the oncology visit; we got the results of the light chain assay. Doug has had an amazingly wonderful response to the Rev/dex chemo. The light chains are now down into the normal range! After just one cycle of chemo, the Lambda light chains went from 83 to 1.95 mg/dL. Wow. What a relief; we had steeled ourselves for possible bad news. Even the doc was happily surprised by the dramatic response.
Doug's kidney function has improved too. The GFR is now up to 70. We'll take it! Because of the kidney improvement, the Revlimid dose can be upped to 25 mg where it should be.
Doug will stay on the Revlimid/dex combo for 6 to 12 months, as well as the Zometa. Then the Revlimid dose can be lowered to a maintenance dose. That will continue as long as it is working.
At some point, the multiple myeloma cancer cells stop responding to whatever drug was working. When that happens we'll need to move on to the next drug. But hopefully that won't be for a long time.
We are so very grateful. We give praise to God and thanks to all who pray for us.
Love to all.
“You thrill me, Lord, with all you have done for me! I sing with joy because of what you have done.” Psalm 92:4
Doug's kidney function has improved too. The GFR is now up to 70. We'll take it! Because of the kidney improvement, the Revlimid dose can be upped to 25 mg where it should be.
Doug will stay on the Revlimid/dex combo for 6 to 12 months, as well as the Zometa. Then the Revlimid dose can be lowered to a maintenance dose. That will continue as long as it is working.
At some point, the multiple myeloma cancer cells stop responding to whatever drug was working. When that happens we'll need to move on to the next drug. But hopefully that won't be for a long time.
We are so very grateful. We give praise to God and thanks to all who pray for us.
Love to all.
“You thrill me, Lord, with all you have done for me! I sing with joy because of what you have done.” Psalm 92:4
Sunday, January 1, 2012
New Year Prayer
Doug and I went to church today, and after a wonderful service we were blessed to work in the kitchen serving rolls, coffee and juice. Our church and the people in it always refresh our spirits.
I found this anonymous New Year's prayer; it spoke to me and I hope you enjoy it too:
May God make your year a happy one!
Not by shielding you from all sorrows and pain,
But by strengthening you to bear it, as it comes;
Not by making your path easy,
But by making you sturdy to travel any path;
Not by taking hardships from you,
But by taking fear from your heart;
Not by granting you unbroken sunshine,
But by keeping your face bright, even in the shadows;
Not by making your life always pleasant,
But by showing you when people and their causes need you most,
and by making you anxious to be there to help.
God’s love, peace, hope and joy to you for the year ahead.
I found this anonymous New Year's prayer; it spoke to me and I hope you enjoy it too:
May God make your year a happy one!
Not by shielding you from all sorrows and pain,
But by strengthening you to bear it, as it comes;
Not by making your path easy,
But by making you sturdy to travel any path;
Not by taking hardships from you,
But by taking fear from your heart;
Not by granting you unbroken sunshine,
But by keeping your face bright, even in the shadows;
Not by making your life always pleasant,
But by showing you when people and their causes need you most,
and by making you anxious to be there to help.
God’s love, peace, hope and joy to you for the year ahead.
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