The scheme I had to remind Doug to drink more - setting the timer - didn't last very long. He said it was "a pain in the a_ _". So I'm keeping quiet about it. I know he is really trying.
Doug had his eyes checked a couple days ago. The optometrist says his eye pressures are under control now, so the glaucoma is not to blame for his vision problems. His vision is fluctuating due to the cancer drugs.
After I had the YAG laser procedure, I got new lenses for my glasses and my vision is fine now. I'm very thankful!
You may remember that one of the locum oncologists gave Doug a prescription for fluconazole for his skin problem. Doug took those pills for three days before he had to stop - it made him very dizzy and nauseated. We finally saw the light and went to a dermatologist. The dermatologist took some skin scrapings and looked at them under a microscope - so she knew exactly what kind of drug to prescribe. Turns out the prescription cream he was using was not the right one and could have actually made it worse! There were too many doctors trying to help. Wish we had sought out a specialist right away.
So Doug is on two weeks of terbinafine pills. She said this drug can cause liver problems so it's not going to be a long term thing. We will go back to see her in three weeks.
We have not gotten the results yet from the latest myeloma panel which shows which direction the light chains are heading.
We have made an appointment to see the myeloma specialist in Denver, but it won't be until July 26.
This is Doug's week off of infusion; we will go back next week on the 13th.
Love to all.
Thursday, June 6, 2019
Thursday, May 30, 2019
Weight down again, Infusion #12
Today was Doug's 12th infusion. His blood counts were ok. But he weighed only 147 pounds. That's the lowest so far. Two weeks ago he was 151.5 so that's a big difference. He had to get a liter of extra fluids today.
I think dehydration is playing a part in his weight loss. He is eating reasonably well, but small amounts, with snacks between meals. Doug is good about taking his water jug with him and keeping it by his recliner at home. But - he forgets to actually drink from it! I have asked him to drink 8 oz of water every morning before his coffee to start the day.
I am trying to encourage, remind him to drink, etc because I am concerned. However that can easily turn into nagging and that's not good! However, if I don't say anything he forgets to drink. The latest scheme is for him to set his phone timer to go off every 20 minutes; then he needs to take a big swig from his water bottle. I'm hoping this will work.
Dehydration can cause so many problems including low blood pressure, dizziness, etc. And it can increase fatigue.
Two weeks ago the oncologist prescribed oral fluconazole for Doug's skin infections. He took it for three days and had to stop because he got very dizzy and nauseated. Even those three days seemed to make an improvement. So far Doug has seen our family NP, a foot specialist, and the oncologist has also checked his skin. Next week he has an appointment with a dermatologist. She is making room in her schedule for Doug, which is a blessing; otherwise he would have to wait a month.
I had the laser procedure on my eyes last week and my sight is better. I'm relieved about that.
Tomorrow I will see our optometrist - bet I can read the eye chart now! And I will get new lenses.
Doug says he is giving up driving for good, except for the three blocks to our church. So my eyes need to work well.
I went with a good friend a few days ago to get a pedicure; silly, but having pretty toes lifted my spirits. Our weather is finally feeling like spring, so it's sandal time. The sunshine is very welcome.
Love to all. Hug someone today!
Today's verse:
"Fix your eyes on what is true, and honorable, and right, and pure, and lovely and admirable. Think about things that are excellent and worthy of praise." Philippians 4:8
I think dehydration is playing a part in his weight loss. He is eating reasonably well, but small amounts, with snacks between meals. Doug is good about taking his water jug with him and keeping it by his recliner at home. But - he forgets to actually drink from it! I have asked him to drink 8 oz of water every morning before his coffee to start the day.
I am trying to encourage, remind him to drink, etc because I am concerned. However that can easily turn into nagging and that's not good! However, if I don't say anything he forgets to drink. The latest scheme is for him to set his phone timer to go off every 20 minutes; then he needs to take a big swig from his water bottle. I'm hoping this will work.
Dehydration can cause so many problems including low blood pressure, dizziness, etc. And it can increase fatigue.
Two weeks ago the oncologist prescribed oral fluconazole for Doug's skin infections. He took it for three days and had to stop because he got very dizzy and nauseated. Even those three days seemed to make an improvement. So far Doug has seen our family NP, a foot specialist, and the oncologist has also checked his skin. Next week he has an appointment with a dermatologist. She is making room in her schedule for Doug, which is a blessing; otherwise he would have to wait a month.
I had the laser procedure on my eyes last week and my sight is better. I'm relieved about that.
Tomorrow I will see our optometrist - bet I can read the eye chart now! And I will get new lenses.
Doug says he is giving up driving for good, except for the three blocks to our church. So my eyes need to work well.
I went with a good friend a few days ago to get a pedicure; silly, but having pretty toes lifted my spirits. Our weather is finally feeling like spring, so it's sandal time. The sunshine is very welcome.
Love to all. Hug someone today!
Today's verse:
"Fix your eyes on what is true, and honorable, and right, and pure, and lovely and admirable. Think about things that are excellent and worthy of praise." Philippians 4:8
Saturday, May 18, 2019
Infusion #11, fluconazole started
This has been a busy week, so this is three day old news!
Doug had his infusion on Thursday. His weight was 151, up a pound from two weeks ago. As long as he can stay in that range I think it will be okay.
Wednesday, the day before infusion, Doug had an appointment with the nephrologist (kidney doc). Myeloma can affect the kidneys, and Doug had kidney disease several years ago. He recovered from that with 70% kidney function but the nephrologist has been seeing him once a year. This time he said Doug doesn't need to see him unless something happens. That's good news.
Doug's lab numbers were good enough for infusion, which went well. We were in clinic about six hours - the lab was slow getting results back.
Doug was scheduled for the regular monthly oncologist visit in clinic. Sadly, the oncologist we have gotten to know and like is out with serious illness. She's in the hospital in Colorado Springs and we all are praying for her. So we saw a "locum" (temporary) doc.
We mentioned that Doug's skin infections are not improving despite continued use of a prescription cream. So the doc gave Doug a prescription for an oral anti-fungal drug. He said it's only a two week supply, then he will reevaluate. He said it has side effects (what doesn't?) and probably best to use for a short time. Sure hope it works!
In addition to the myeloma, Doug has low immunoglobulins which is compounding the problem.
The doc said sometimes if a patient continues to have persistent infections, they give infusions of I.V.I.G but that's usually for sinus or respiratory infections.
Things are going along as well as can be expected here. Doug is managing his fatigue. He has started to drive again, but only short trips in town. This is encouraging.
We went to Colorado Springs twice this week; once to take our car to the dealership for recall work, then again yesterday to pick the car up. Meanwhile they provided a loaner for us to use. I enjoyed driving the 2019 Subaru Outback with all the new features. It had a large media/backup screen and a large digital speedometer display, plus lane departure warnings and cruise control that senses if the car is too close to one ahead - it slows you down automatically. Nice.
I'm tired from the highway driving but so thankful that I can do it.
Guess it's my turn for eye problems. My left eye vision has gotten much worse. Next Friday I have to go to a specialist in Colorado Springs to have a laser procedure done. Praying that God will keep me able to drive. Our wonderful neighbor has kindly offered to drive us on Friday. We are blessed!
Love to all.
Today's verse:
I will rescue those who love me. I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them. Psalm 91:14-15
Doug had his infusion on Thursday. His weight was 151, up a pound from two weeks ago. As long as he can stay in that range I think it will be okay.
Wednesday, the day before infusion, Doug had an appointment with the nephrologist (kidney doc). Myeloma can affect the kidneys, and Doug had kidney disease several years ago. He recovered from that with 70% kidney function but the nephrologist has been seeing him once a year. This time he said Doug doesn't need to see him unless something happens. That's good news.
Doug's lab numbers were good enough for infusion, which went well. We were in clinic about six hours - the lab was slow getting results back.
Doug was scheduled for the regular monthly oncologist visit in clinic. Sadly, the oncologist we have gotten to know and like is out with serious illness. She's in the hospital in Colorado Springs and we all are praying for her. So we saw a "locum" (temporary) doc.
We mentioned that Doug's skin infections are not improving despite continued use of a prescription cream. So the doc gave Doug a prescription for an oral anti-fungal drug. He said it's only a two week supply, then he will reevaluate. He said it has side effects (what doesn't?) and probably best to use for a short time. Sure hope it works!
In addition to the myeloma, Doug has low immunoglobulins which is compounding the problem.
The doc said sometimes if a patient continues to have persistent infections, they give infusions of I.V.I.G but that's usually for sinus or respiratory infections.
Things are going along as well as can be expected here. Doug is managing his fatigue. He has started to drive again, but only short trips in town. This is encouraging.
We went to Colorado Springs twice this week; once to take our car to the dealership for recall work, then again yesterday to pick the car up. Meanwhile they provided a loaner for us to use. I enjoyed driving the 2019 Subaru Outback with all the new features. It had a large media/backup screen and a large digital speedometer display, plus lane departure warnings and cruise control that senses if the car is too close to one ahead - it slows you down automatically. Nice.
I'm tired from the highway driving but so thankful that I can do it.
Guess it's my turn for eye problems. My left eye vision has gotten much worse. Next Friday I have to go to a specialist in Colorado Springs to have a laser procedure done. Praying that God will keep me able to drive. Our wonderful neighbor has kindly offered to drive us on Friday. We are blessed!
Love to all.
Today's verse:
I will rescue those who love me. I will protect those who trust in my name. When they call on me, I will answer; I will be with them and honor them. Psalm 91:14-15
Friday, May 3, 2019
Dara Infusion #10
Yesterday Doug had his dara infusion. Cycle 3, day 15.
His lab numbers were good enough to 'qualify' for infusion.
WBC 3.0
HGB 12.1
PLT 134
ANC 1.6
Blood pressure 123/62.
Labs are a little low, but not bad for a chemo patient.
He also had a blood draw for a myeloma panel. This is the test that shows the cancer indicators. Fingers crossed for that result.
His weight was 150, down from 151 last time. He weighed 161 in January when the chemo combo started. He is eating, and I'm encouraging between meal snacks. We have a couple different kinds of "Boost" type supplements but he prefers real food. Nuts are good.
It was an uneventful five hours in infusion clinic. It's hard for Doug to sit in the infusion chair for that long stretch; he could ask for a relaxing drug but he doesn't want to feel "drugged".
He didn't like what was on the menu, so he requested a cheeseburger. He said it was good.
Doug's athlete's foot is no better. We went to the foot specialist for a recheck and he said this might not go away while Doug is on these drugs. I treat his feet twice a day with two different kinds of cream. At least he doesn't feel any itching. Especially because of he diabetes, I keep a careful watch.
Our 'normal' keeps changing. Thank you Jesus for keeping us strong.
Love to all.
His lab numbers were good enough to 'qualify' for infusion.
WBC 3.0
HGB 12.1
PLT 134
ANC 1.6
Blood pressure 123/62.
Labs are a little low, but not bad for a chemo patient.
He also had a blood draw for a myeloma panel. This is the test that shows the cancer indicators. Fingers crossed for that result.
His weight was 150, down from 151 last time. He weighed 161 in January when the chemo combo started. He is eating, and I'm encouraging between meal snacks. We have a couple different kinds of "Boost" type supplements but he prefers real food. Nuts are good.
It was an uneventful five hours in infusion clinic. It's hard for Doug to sit in the infusion chair for that long stretch; he could ask for a relaxing drug but he doesn't want to feel "drugged".
He didn't like what was on the menu, so he requested a cheeseburger. He said it was good.
Doug's athlete's foot is no better. We went to the foot specialist for a recheck and he said this might not go away while Doug is on these drugs. I treat his feet twice a day with two different kinds of cream. At least he doesn't feel any itching. Especially because of he diabetes, I keep a careful watch.
Our 'normal' keeps changing. Thank you Jesus for keeping us strong.
Love to all.
Wednesday, April 24, 2019
Less fatigue!
Doug has been on the lower dose of Revlimid for one week, and his fatigue is lifting a bit. He's not a ball of fire, but he is interested in doing more. He took the garbage out to the curb, is walking to the mailbox (not far) and is puttering around the house more. Not a dramatic change, but noticeable. We are very thankful!
We did stay home for Easter; our church live streams the services so we were able to watch it. Jesus is risen! Hallelujah!
Yesterday we took a drive up toward Cottonwood Pass. We saw several Bighorn sheep! They were fairly close to the road so we got a good look. Such magnificent animals! One was a big ram. Unfortunately there was no place to pull off the road to take a photo, but it's something to remember.
Further on and higher up, we almost got stuck in a big patch of slush/snow. It looked passable and we have four wheel drive, but we had no traction. I had a bit of a hard time getting turned around but it was worth it.
Tomorrow is Doug's day off infusion now that he is on every other week. He still has a ton of pills to take.
Love to all.
Today's verse:
"The Lord has done great things for us and we are filled with Joy." Psalm 126:3
We did stay home for Easter; our church live streams the services so we were able to watch it. Jesus is risen! Hallelujah!
Yesterday we took a drive up toward Cottonwood Pass. We saw several Bighorn sheep! They were fairly close to the road so we got a good look. Such magnificent animals! One was a big ram. Unfortunately there was no place to pull off the road to take a photo, but it's something to remember.
Further on and higher up, we almost got stuck in a big patch of slush/snow. It looked passable and we have four wheel drive, but we had no traction. I had a bit of a hard time getting turned around but it was worth it.
Tomorrow is Doug's day off infusion now that he is on every other week. He still has a ton of pills to take.
Love to all.
Today's verse:
"The Lord has done great things for us and we are filled with Joy." Psalm 126:3
Thursday, April 18, 2019
Infusion #9
Today Doug's blood counts were much better, and he gained three pounds! His fatigue lessened too.
It's amazing how much difference one week off treatment can make.
Labs:
WBC 3.7
HGB 11.7
PLT 199
ANC 2.0
So Doug got his Dara infusion, (with all the pre-meds too) and he got the go-ahead from the oncologist to go back on the Revlimid pill, at a lower dose of 10 mg. He started at 25 mg, then it was lowered to 15 mg, now he is at 10. Hopefully he will be able to tolerate that dose.
The lambda light chains have gone up, kappa has gone down and the ratio is low. Only myeloma nerds will know what I'm talking about, but that's not good news. For the first two months of this treatment, the light chains dropped to a normal range. That meant the treatment was effective.
Rising light chains could mean the cancer cells are active again.
The local oncologist called Dr. M, the Denver myeloma specialist to find out how he wants to handle that. Dr. M does not get upset; he said a small rise can happen - don't worry about it yet, just stay the course and watch it. At the next infusion in two weeks, they will draw blood for another myeloma panel.
We will try to enjoy our latest "normal" for two weeks. I'm hoping Doug will be able to get out more.
It was a good day, but still tiring, in clinic for five hours. We are invited to our kids in Denver for Easter, but honestly, we are both bordering on exhausted. A two hour drive each way seems daunting right now. So much as I would love to see everyone, I think we will stay home.
I'm thanking God for keeping the caregiver strong and healthy to take care of Doug. I'd better pray for energy and stamina too!
Love to all.
It's amazing how much difference one week off treatment can make.
Labs:
WBC 3.7
HGB 11.7
PLT 199
ANC 2.0
So Doug got his Dara infusion, (with all the pre-meds too) and he got the go-ahead from the oncologist to go back on the Revlimid pill, at a lower dose of 10 mg. He started at 25 mg, then it was lowered to 15 mg, now he is at 10. Hopefully he will be able to tolerate that dose.
The lambda light chains have gone up, kappa has gone down and the ratio is low. Only myeloma nerds will know what I'm talking about, but that's not good news. For the first two months of this treatment, the light chains dropped to a normal range. That meant the treatment was effective.
Rising light chains could mean the cancer cells are active again.
The local oncologist called Dr. M, the Denver myeloma specialist to find out how he wants to handle that. Dr. M does not get upset; he said a small rise can happen - don't worry about it yet, just stay the course and watch it. At the next infusion in two weeks, they will draw blood for another myeloma panel.
We will try to enjoy our latest "normal" for two weeks. I'm hoping Doug will be able to get out more.
It was a good day, but still tiring, in clinic for five hours. We are invited to our kids in Denver for Easter, but honestly, we are both bordering on exhausted. A two hour drive each way seems daunting right now. So much as I would love to see everyone, I think we will stay home.
I'm thanking God for keeping the caregiver strong and healthy to take care of Doug. I'd better pray for energy and stamina too!
Love to all.
Thursday, April 11, 2019
Hold Treatment - low counts, weight loss
Doug had last week off from the infusion drug Daratumumab (dara) according to the treatment protocol, but he still took his oral drugs Revlimid and dexamethasone. His fatigue did not improve; so that points to the Revlimid as cause of the fatigue. Today was supposed to be infusion day - but his counts were low, fatigue still very much present, and he lost more weight - he was down to 148 pounds today; two weeks ago it was 152. January 17 he weighed 164.
So with all those factors combined, the oncologist decided to hold treatment - give him another week off the dara and temporarily stop the Revlimid until the fatigue lessens. Then the Rev will restart at a lower dose. He will keep taking the dex weekly. We go back next week.
Today his blood counts were:
WBC 1.9
HGB 11.8
PLT 105
ANC 1.0
We got results of the most recent myeloma panel blood test. This shows what the light chains (cancer markers) are doing. The last two months they were all within normal limits. Now the Lambda light chains are rising. Not the direction we want them to go!
Doug has been eating but he doesn't want large amounts. He is trying to do snacks between meals.
This part of our cancer journey is getting a bit bumpier. Lots of twists and turns on the road ahead. We cherish all our friends who so faithfully pray for us.
Today's verse is part of the lyrics of a song we heard in church recently:
Jesus draw me ever nearer,
As I labor through the storm.
You have called me to this passage,
and I'll follow, though I'm worn.
May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.
Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.
So with all those factors combined, the oncologist decided to hold treatment - give him another week off the dara and temporarily stop the Revlimid until the fatigue lessens. Then the Rev will restart at a lower dose. He will keep taking the dex weekly. We go back next week.
Today his blood counts were:
WBC 1.9
HGB 11.8
PLT 105
ANC 1.0
We got results of the most recent myeloma panel blood test. This shows what the light chains (cancer markers) are doing. The last two months they were all within normal limits. Now the Lambda light chains are rising. Not the direction we want them to go!
Doug has been eating but he doesn't want large amounts. He is trying to do snacks between meals.
This part of our cancer journey is getting a bit bumpier. Lots of twists and turns on the road ahead. We cherish all our friends who so faithfully pray for us.
Today's verse is part of the lyrics of a song we heard in church recently:
Jesus draw me ever nearer,
As I labor through the storm.
You have called me to this passage,
and I'll follow, though I'm worn.
May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.
Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more.
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