Love to all, and our best wishes for
Saturday, December 31, 2011
Waiting
Nothing much has happened lately. Doug is having relatively minor side effects from the Revlimid/Dex chemo. Trouble sleeping, fatigue, indigestion. He gets 'wired' at times and has trouble relaxing. Understandable. Next week we will get results to see how effective this chemo has been. Stay tuned.
Love to all, and our best wishes for
Love to all, and our best wishes for
Saturday, December 24, 2011
Merry Christmas
We went to the most wonderful Christmas Eve service tonight at our church. Doug has not wanted to go anywhere or do anything lately, but I'm glad he made the effort tonight. It was inspirational and lovely.
I found this from Max Lucado:
"God isn't going to
let you see the distant scene.
So you might as well quit looking for it.
He promises a lamp unto our feet,
not a crystal ball into the future.
We do not need to know what
will happen tomorrow.
We only need to know He leads."
As we celebrate this Christmas season, may you feel His loving presence in everything you do.
I found this from Max Lucado:
"God isn't going to
let you see the distant scene.
So you might as well quit looking for it.
He promises a lamp unto our feet,
not a crystal ball into the future.
We do not need to know what
will happen tomorrow.
We only need to know He leads."
As we celebrate this Christmas season, may you feel His loving presence in everything you do.
Tuesday, December 20, 2011
Radiation Consult on Right Arm
Today we went to Shaw Cancer Center for a consult with the Radiation Oncologist regarding Doug's right arm. The bone skeletal survey had shown a 5 cm. lesion in the upper arm. Dr. H. showed us the x-rays and said although the cortex (the strong outside part of the bone - picture the bone of a round steak) is not involved, the marrow has lots of myeloma present.
Doug is not having any pain in the arm. Dr. H said there is a possibility of pathological fracture, but she can't be sure if that would happen.
We decided to wait on the radiation. We'll know in about two more weeks if the Revlimid/Dex is successful in lowering the light chains. If the light chains go down, and Doug does not develop pain in the arm, then radiation might not be needed.
We saw today the result of the baseline FreeLite test that was done on 12-13 before Doug started the Revlimid/Dex chemo; we knew it would not show any improvement.
July 5 the light chains were 41.3 mg/dL
Oct 6 the number was 47.3
Dec 13 was 83.0
The scary part here is how fast the light chains are rising. In 10 weeks they almost doubled.
The light chain numbers are the indicator of disease progression. Going higher is not good. We need them to come way down.
The next FreeLite blood test will be done Jan 2, after the first course of chemo. We see the oncologist Dr. M on Jan 4. Hopefully he will have the results then. If the light chains don't go down, then we go to Plan B. Waiting is hard.
Doug is feeling pretty good with only slight side effects from the chemo - some fatigue and altered taste buds and constipation. He manages to stay calm and his sense of humor is intact. He does take Ativan to help him sleep at night. On the Dex days he needs a sleeping pill; the Dex 'wires' him.
The roads were good with only slight snowpack. Snow on the high mountains was gorgeous. On the way we saw 7 or 8 Bighorn Sheep - they crossed the road in front of us. Magnificent animals.
Love to all.
Be still in the presence of the Lord and wait patiently for him to act. Psalm 37:7
Doug is not having any pain in the arm. Dr. H said there is a possibility of pathological fracture, but she can't be sure if that would happen.
We decided to wait on the radiation. We'll know in about two more weeks if the Revlimid/Dex is successful in lowering the light chains. If the light chains go down, and Doug does not develop pain in the arm, then radiation might not be needed.
We saw today the result of the baseline FreeLite test that was done on 12-13 before Doug started the Revlimid/Dex chemo; we knew it would not show any improvement.
July 5 the light chains were 41.3 mg/dL
Oct 6 the number was 47.3
Dec 13 was 83.0
The scary part here is how fast the light chains are rising. In 10 weeks they almost doubled.
The light chain numbers are the indicator of disease progression. Going higher is not good. We need them to come way down.
The next FreeLite blood test will be done Jan 2, after the first course of chemo. We see the oncologist Dr. M on Jan 4. Hopefully he will have the results then. If the light chains don't go down, then we go to Plan B. Waiting is hard.
Doug is feeling pretty good with only slight side effects from the chemo - some fatigue and altered taste buds and constipation. He manages to stay calm and his sense of humor is intact. He does take Ativan to help him sleep at night. On the Dex days he needs a sleeping pill; the Dex 'wires' him.
The roads were good with only slight snowpack. Snow on the high mountains was gorgeous. On the way we saw 7 or 8 Bighorn Sheep - they crossed the road in front of us. Magnificent animals.
Love to all.
Be still in the presence of the Lord and wait patiently for him to act. Psalm 37:7
Monday, December 12, 2011
Progress at last
Today we spent an hour at the oncologist's office. Doug's kidney function is down. The GFR is now 51, was 54 last week. We would like to see the GFR at least 60.
So Dr. M. ordered the Revlimid dose lowered to 10 mg instead of 25.
His assistant spent at least 30 minutes on the phone to Accredo, the pharmacy; she talked to five different people. Since the dose was not the same as originally ordered, there was confusion on their end; Medco/Accredo does not have the most efficient organization. At one point it seemed like we might have to start over with the paperwork. Finally they agreed to ship the Revlimid - it should come tomorrow. Yeah, at last! Doug should have been on Revlimid two weeks ago.
Now we have ammunition to fight this cancer. We should know in a month if the Revlimid is knocking back the myeloma light chains. If yes, Doug stays on it. If no, then we go to Plan B, which is adding another chemo drug.
Although Doug's kidney function is worrisome, at this point it is considered adequate. Dr. M. told us that he thinks we will see improved kidney function when the chemo reduces the light chain load.
We were supposed to have a consult with the radiation oncologist in Edwards tomorrow -- we have put that off until next week, as we need to be home to accept delivery of the Revlimid. Doug will go to the hospital tomorrow to get a blood draw so we can have a baseline on the light chains right before he takes the Rev. I will stay home to sign for the Rev.
There have been a lot of emotional ups and downs lately, but now we feel we are doing something to attack this disease. Feels good.
So Dr. M. ordered the Revlimid dose lowered to 10 mg instead of 25.
His assistant spent at least 30 minutes on the phone to Accredo, the pharmacy; she talked to five different people. Since the dose was not the same as originally ordered, there was confusion on their end; Medco/Accredo does not have the most efficient organization. At one point it seemed like we might have to start over with the paperwork. Finally they agreed to ship the Revlimid - it should come tomorrow. Yeah, at last! Doug should have been on Revlimid two weeks ago.
Now we have ammunition to fight this cancer. We should know in a month if the Revlimid is knocking back the myeloma light chains. If yes, Doug stays on it. If no, then we go to Plan B, which is adding another chemo drug.
Although Doug's kidney function is worrisome, at this point it is considered adequate. Dr. M. told us that he thinks we will see improved kidney function when the chemo reduces the light chain load.
We were supposed to have a consult with the radiation oncologist in Edwards tomorrow -- we have put that off until next week, as we need to be home to accept delivery of the Revlimid. Doug will go to the hospital tomorrow to get a blood draw so we can have a baseline on the light chains right before he takes the Rev. I will stay home to sign for the Rev.
There have been a lot of emotional ups and downs lately, but now we feel we are doing something to attack this disease. Feels good.
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
Sunday, December 11, 2011
My Dream
I don't usually remember dreams, and I have never put a lot of stock into interpreting dreams. But last night I had a dream that was crystal clear and I could remember details. I wrote it down when I got up.
The bridge gets narrower,
and suddenly the center drops out - I have only a few inches to walk on. I grip
the railing and walk carefully. The foundation is still strong. I am careful
not to look down at the sea, but I can hear it. Don't look down!
The planking sometimes gets
wider again and the large hole in the center disappears. A thick fog rolls in; I can't see
ahead. I have to hold on or I might fall. The ocean is below. The bridge
surface is not smooth anymore - it has some holes in it - I almost step through a hole. Hold tight to the
railing. Keep walking, the railing will hold me. I feel scared because I can't
see anything. Is there a sharp turn ahead? Will the bridge suddenly end - will
I fall off? Hold on tight. The bridge will not fail if I hold on to the
railing.
The fog lifts but all I can
see is the bridge ahead and the sea below. I feel calmer - I don't seem worried
and I keep walking.
That's all; no dramatic ending. The bridge foundation is my faith in God; the railing is my trust in Him. The sea is Multiple Myeloma; the holes are Worry. I am not sure what the fog represents.
The future is unknown. Hold on to the railing.
I am standing on a bridge.
It is large and wide, wide enough for cars. The bridge rests on huge round
concrete looking support pillars. It looks safe, and I am holding onto a sturdy
railing. I start walking - the only things I can see are the bridge ahead of me
and the sea underneath. I am walking confidently but I don't know where I am
going. There is no one else with me.
That's all; no dramatic ending. The bridge foundation is my faith in God; the railing is my trust in Him. The sea is Multiple Myeloma; the holes are Worry. I am not sure what the fog represents.
The future is unknown. Hold on to the railing.
Saturday, December 10, 2011
Baby steps
Thursday the Accredo pharmacy called to get our credit card number. They put a hefty charge on it. Fortunately, the patient assistance grant came though; they will reimburse us for out of pocket expenses for medications, up to a certain point. We are so thankful for that.
Yesterday, someone else from Accredo called to check our address for delivery of the Revlimid. We had to tell them to hold the shipment until Monday because of the possible dose adjustment. Baby steps.
Dr. M, the oncologist, called yesterday. He said the radiologist doesn't think Doug's arm is in danger of fracturing. However, Dr. M wants us to go see the radiation oncologist, to get her opinion. So next Tuesday we have an appointment with Dr. Hardenburgh in Edwards.
Monday we should find out about Doug's kidney function. That is my key concern right now. Meanwhile we are counting our joys.
Yesterday, someone else from Accredo called to check our address for delivery of the Revlimid. We had to tell them to hold the shipment until Monday because of the possible dose adjustment. Baby steps.
Dr. M, the oncologist, called yesterday. He said the radiologist doesn't think Doug's arm is in danger of fracturing. However, Dr. M wants us to go see the radiation oncologist, to get her opinion. So next Tuesday we have an appointment with Dr. Hardenburgh in Edwards.
Monday we should find out about Doug's kidney function. That is my key concern right now. Meanwhile we are counting our joys.
Man
is fond of counting his troubles but he does not count his joys. If he counted
them up as he ought, he would see that every lot has enough happiness provided
for it. Fyodor Dostoevski
Thursday, December 8, 2011
Results of skeletal survey, Kidney Function
Today Doug had his Zometa infusion done at the hospital infusion center. It takes about an hour for the infusion because Doug needs extra fluids given to help protect his kidneys. A blood draw is always done first to check his creatinine. More on kidneys later in this post.
Dr Myers gave us the results of yesterday's skeletal survey: scattered small lesions in the skull, pelvis, upper femurs. The largest lesion was seen in the upper right arm. The small ones are not expected to be a problem; the Zometa should encourage bone repair in those areas. The radiologist could not see if the bony cortex is involved in the right arm - we don't know if that area could be in danger of pathological fracture. So Dr. M ordered a CT scan of the right upper arm; luckily we were able to get that done while we were at the hospital. If it looks serious enough, Doug might need more radiation therapy. I have a gut feeling that won't be necessary but we'll wait and see.
The big concern today is kidney function. Doug had kidney damage from lack of blood flow when he had the complete heart block in 2009; the kidneys recovered fairly well from that. The myeloma itself can cause kidney damage -- especially light chain myeloma which Doug has now. Zometa is also hard on kidneys; that's why extra fluids are administered along with the Zometa.
Today's blood test showed creatinine of 1.4, BUN 20 and eGFR 54. According to one of my sources, BUN and creatinine will not be raised above the normal range until 60% of total kidney function is lost.
Our local oncologist Dr. M conferred with the super-specialist in Denver, Dr. Jeff. Doug will need to do a 24 hour urine test to get a better read on the GFR.
Both doctors say that if the GFR is less than 60, Doug won't be able to get the full dose of Revlimid. Revlimid is a nephrotoxic drug, meaning that it can harm the kidneys. This is a catch-22. Doug needs the highest dose of Revlimid (25 mg) to attack the cancer. But he also needs his kidneys to keep functioning! A lower dose would be less damaging to the kidneys, but not as effective against the myeloma.
All those out there who pray for us, please pray for adequate kidney function so Doug can get the full dose of Revlimid to fight the cancer.
Our spirits are good. Doug looks very good - just by looking at him, no one would ever know he has cancer.
"We who have fled to God for refuge can have great confidence as we hold to the hope that lies before us. This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary." Hebrews 6:18-19
Dr Myers gave us the results of yesterday's skeletal survey: scattered small lesions in the skull, pelvis, upper femurs. The largest lesion was seen in the upper right arm. The small ones are not expected to be a problem; the Zometa should encourage bone repair in those areas. The radiologist could not see if the bony cortex is involved in the right arm - we don't know if that area could be in danger of pathological fracture. So Dr. M ordered a CT scan of the right upper arm; luckily we were able to get that done while we were at the hospital. If it looks serious enough, Doug might need more radiation therapy. I have a gut feeling that won't be necessary but we'll wait and see.
The big concern today is kidney function. Doug had kidney damage from lack of blood flow when he had the complete heart block in 2009; the kidneys recovered fairly well from that. The myeloma itself can cause kidney damage -- especially light chain myeloma which Doug has now. Zometa is also hard on kidneys; that's why extra fluids are administered along with the Zometa.
Today's blood test showed creatinine of 1.4, BUN 20 and eGFR 54. According to one of my sources, BUN and creatinine will not be raised above the normal range until 60% of total kidney function is lost.
Our local oncologist Dr. M conferred with the super-specialist in Denver, Dr. Jeff. Doug will need to do a 24 hour urine test to get a better read on the GFR.
Glomerular
filtration rate (GFR)
describes the flow rate of filtered fluid through the kidney. It tells what the renal (kidney) function is - a more sensitive test.
Both doctors say that if the GFR is less than 60, Doug won't be able to get the full dose of Revlimid. Revlimid is a nephrotoxic drug, meaning that it can harm the kidneys. This is a catch-22. Doug needs the highest dose of Revlimid (25 mg) to attack the cancer. But he also needs his kidneys to keep functioning! A lower dose would be less damaging to the kidneys, but not as effective against the myeloma.
All those out there who pray for us, please pray for adequate kidney function so Doug can get the full dose of Revlimid to fight the cancer.
Our spirits are good. Doug looks very good - just by looking at him, no one would ever know he has cancer.
"We who have fled to God for refuge can have great confidence as we hold to the hope that lies before us. This hope is a strong and trustworthy anchor for our souls. It leads us through the curtain into God’s inner sanctuary." Hebrews 6:18-19
Wednesday, December 7, 2011
Skeletal Survey
Doug had his skeletal survey x-rays taken today.
A skeletal
survey is a series of plain x-rays of bones in the body that are most likely to be involved with myeloma. It usually consists of side view of the skull, side and front views of the entire spine, front views of both upper arm bones, ribs, pelvis and both femurs.
On Dec 2 when we saw Dr. Matous for the second opinion, he said the correct term for what Doug has now is "Lambda Light Chain Myeloma", and 15% of myeloma patients are in this group.
The radiologist will be looking for 'lytic lesions', which are "punched out" areas of bone. At least 30% bone loss is required to visualize the destructive process.
The purpose of doing the skeletal survey is to identify places that will become a problem if not treated. Prevention of possible fractures and pain is the goal. I like that goal.
On Dec 2 when we saw Dr. Matous for the second opinion, he said the correct term for what Doug has now is "Lambda Light Chain Myeloma", and 15% of myeloma patients are in this group.
Today has been a good day - calm and quiet.
Love to all.
"The Lord keeps watch over you, both now and forever." Psalm
121:8
Tuesday, December 6, 2011
Where's the Revlimid?
We are still waiting to get the Revlimid. It was ordered by the Salida oncologist last Wed Nov 30 when we were at the office. As I've said, Revlimid is a tightly controlled drug - rightly so, since it is a cousin to Thalidomide - anyone remember those terribly deformed babies? Celgene, the maker of Revlimid, requires tons of paperwork to be done before anyone can get it. Doug had to state several times that he would not get anyone pregnant. Realizing that there would be many forms to fill out, we stayed at the oncologist's office an extra hour so Doug could sign and the office could fax back to Celgene, then get their approval. There was also insurance pre-approval paperwork faxed back and forth. And paperwork to and from the mail order pharmacy that actually dispenses the drug.
Finally all seemed in order. The oncologist's assistant is good - she is persistent and we left feeling that the Revlimid would be here soon. We know from our previous experience that the Rev comes via overnight delivery, and the mail order pharmacy, Medco, always calls to make sure we are home to accept delivery.
Monday (yesterday) and no phone call from the pharmacy. Doug went to their website; the order showed up there. So Doug called Medco to ask what is the problem. The nice lady checked and informed Doug that the hangup was in the billing department. Evidently they hadn't been assured of payment. Frustrating. Then Doug called the oncologist's assistant in Salida - she made three phone calls to the pharmacy, called us back to say all seems in order.
As of this writing we still have not gotten the phone call to expect delivery. I want to shake someone! The system is broken. The sooner Doug gets started on the Rev the better. Waiting is not good. I am trying to stay calm; Doug is getting good at it.
Part 2: Doug called the oncology office again. The Dr's assistant suggested we call the pharmacy directly to omit the middle person. Doug did call -- he found out there is another entity involved: Medco has a subsidiary 'specialty pharmacy' by the name of Accredo. They handle the 'high-risk' drugs. The person there said the fax from the oncologist's office went to Medco instead of Accredo. Can this get any more complicated?
Finally all seemed in order. The oncologist's assistant is good - she is persistent and we left feeling that the Revlimid would be here soon. We know from our previous experience that the Rev comes via overnight delivery, and the mail order pharmacy, Medco, always calls to make sure we are home to accept delivery.
Monday (yesterday) and no phone call from the pharmacy. Doug went to their website; the order showed up there. So Doug called Medco to ask what is the problem. The nice lady checked and informed Doug that the hangup was in the billing department. Evidently they hadn't been assured of payment. Frustrating. Then Doug called the oncologist's assistant in Salida - she made three phone calls to the pharmacy, called us back to say all seems in order.
As of this writing we still have not gotten the phone call to expect delivery. I want to shake someone! The system is broken. The sooner Doug gets started on the Rev the better. Waiting is not good. I am trying to stay calm; Doug is getting good at it.
Part 2: Doug called the oncology office again. The Dr's assistant suggested we call the pharmacy directly to omit the middle person. Doug did call -- he found out there is another entity involved: Medco has a subsidiary 'specialty pharmacy' by the name of Accredo. They handle the 'high-risk' drugs. The person there said the fax from the oncologist's office went to Medco instead of Accredo. Can this get any more complicated?
Saturday, December 3, 2011
Results of Second Opinion
Yesterday we went to Denver to get a second opinion on how to proceed with treatment for Doug's recurrence of MM. I am thanking God for guiding us to get this opinion now. We saw Dr. Jeff Matous who was Doug's transplant doc in 2009. Dr. Jeff is an amazing guy. He goes to all the big myeloma conferences and often is a speaker, presenting papers. He knows all the latest stuff on MM. He is also a really great human being.
Dr. Jeff told us that we have "lots of options". He agrees with what Dr. M in Salida wants to do (Revlimid and Dexamethasone) but with one important difference: we will be using a new type of blood test (FreeLite) to follow up after each cycle (each month) instead of the old test after every two cycles. Jeff says - "You can't wait two months, we need to know right away if this is working or not." Dr. Jeff also agrees with the necessity of Zometa.
Dr. Jeff laid out - actually wrote out for us - a flow chart. If the Rev/Dex doesn't lower the light chains enough, then we go to plan B, which is to add Velcade to the Rev/Dex combo. I won't go into all the options now, but he wrote down seven different drug combos, going from the simplest to more complicated. The more complicated, the more side effects. Option #5 is a second stem cell transplant -- Doug says "no way!".
When he was looking over the previous lab results that were done in Salida, Dr. Jeff noticed a startling thing: the Salida myeloma panel is sent to Mayo Clinic, which uses different lab units of measurement. So when Dr. Jeff was talking on the phone to Dr. M in Salida, they were actually unknowingly talking apples to oranges.
Mayo uses mg/dL = milligrams per deciliter.
Almost every other lab in the country uses mg/L = milligrams per liter.
Huge difference!
The October light chains were reported as 47.3 mg/dL - spoken informally over the phone as "47.3" Dr. Jeff heard 47.3 and thought 'thats high but not so bad' when the two docs were talking. When he was looking at the actual paper, he noticed the mg/dL and said "Wow - that would be 473 in our lab!" Much higher than he was thinking - not good.
So pay attention all you other myeloma patients - make sure if you use more than one doctor that they are not comparing apples to oranges! I know Mayo is an entity unto itself, but they should get with the program and conform to the rest of the country, or at least make the mg/dL in bold print so it is easily noticed.
We will still go to Salida for the monthly blood draw and for the Zometa - Dr. M will be working closely with Dr. Jeff and sending all reports to him. We will be depending on Dr. Jeff to make all the important decisions if we have to change course. We are comfortable with this plan.
As we were leaving the clinic, Dr. Jeff asked us what route we were taking home - he told us a better way to go, and even drew a map so we wouldn't get lost. What a guy.
We had good travel weather, good road surfaces. Woke up to snow this morning. On a sad note - we had to euthanize our little Chester chihuahua this morning. His heart finally gave out after over a year of medications. This will be the first time in 33 years that we are dogless. I don't want another dog right now.
Love to all.
Dr. Jeff told us that we have "lots of options". He agrees with what Dr. M in Salida wants to do (Revlimid and Dexamethasone) but with one important difference: we will be using a new type of blood test (FreeLite) to follow up after each cycle (each month) instead of the old test after every two cycles. Jeff says - "You can't wait two months, we need to know right away if this is working or not." Dr. Jeff also agrees with the necessity of Zometa.
Dr. Jeff laid out - actually wrote out for us - a flow chart. If the Rev/Dex doesn't lower the light chains enough, then we go to plan B, which is to add Velcade to the Rev/Dex combo. I won't go into all the options now, but he wrote down seven different drug combos, going from the simplest to more complicated. The more complicated, the more side effects. Option #5 is a second stem cell transplant -- Doug says "no way!".
When he was looking over the previous lab results that were done in Salida, Dr. Jeff noticed a startling thing: the Salida myeloma panel is sent to Mayo Clinic, which uses different lab units of measurement. So when Dr. Jeff was talking on the phone to Dr. M in Salida, they were actually unknowingly talking apples to oranges.
Mayo uses mg/dL = milligrams per deciliter.
Almost every other lab in the country uses mg/L = milligrams per liter.
Huge difference!
The October light chains were reported as 47.3 mg/dL - spoken informally over the phone as "47.3" Dr. Jeff heard 47.3 and thought 'thats high but not so bad' when the two docs were talking. When he was looking at the actual paper, he noticed the mg/dL and said "Wow - that would be 473 in our lab!" Much higher than he was thinking - not good.
So pay attention all you other myeloma patients - make sure if you use more than one doctor that they are not comparing apples to oranges! I know Mayo is an entity unto itself, but they should get with the program and conform to the rest of the country, or at least make the mg/dL in bold print so it is easily noticed.
We will still go to Salida for the monthly blood draw and for the Zometa - Dr. M will be working closely with Dr. Jeff and sending all reports to him. We will be depending on Dr. Jeff to make all the important decisions if we have to change course. We are comfortable with this plan.
As we were leaving the clinic, Dr. Jeff asked us what route we were taking home - he told us a better way to go, and even drew a map so we wouldn't get lost. What a guy.
We had good travel weather, good road surfaces. Woke up to snow this morning. On a sad note - we had to euthanize our little Chester chihuahua this morning. His heart finally gave out after over a year of medications. This will be the first time in 33 years that we are dogless. I don't want another dog right now.
Love to all.
Thursday, December 1, 2011
Going for Second Opinion
Doug has decided he does not want to wait until two cycles have passed. He wants to get a second opinon now. Yes!! I am very glad.
We emailed the physician who was Doug's transplant doc and asked for an appointment. Dr. Jeff M. said that he would see us, and he forwarded our email to his scheduling person. Dr. Jeff is a very busy man but we were hoping to be able to see him soon. The scheduling person found a cancellation, and we are going tomorrow! Wow.
We have to go to Denver to see this highly regarded myeloma expert, and will be driving home in the dark. Driving on mountain roads in the dark of winter is not our favorite thing but we can do that.
This is a good thing, a blessing. How many physicians of his stature even check their email - and then answer that same morning?! Wow.
We emailed the physician who was Doug's transplant doc and asked for an appointment. Dr. Jeff M. said that he would see us, and he forwarded our email to his scheduling person. Dr. Jeff is a very busy man but we were hoping to be able to see him soon. The scheduling person found a cancellation, and we are going tomorrow! Wow.
We have to go to Denver to see this highly regarded myeloma expert, and will be driving home in the dark. Driving on mountain roads in the dark of winter is not our favorite thing but we can do that.
This is a good thing, a blessing. How many physicians of his stature even check their email - and then answer that same morning?! Wow.
Wednesday, November 30, 2011
Oncology Visit
Today we had the appointment with the medical oncologist who has been doing the follow ups on Doug. The last time we saw him (Oct 26) we were told that Doug was still in remission, and that his hip pain was probably 'arthritis'. A week later, after CT scan results showed lytic lesions (bone destruction), the oncologist called us on the phone to tell us that Doug is not in remission and he needed to go for radiation on the hip. The reason his relapse was not noticed before: the myeloma has 'mutated' into light chain disease (nonsecretory myeloma), thus there is no M-spike on the blood work. (Actually the elevated light chains did show on the blood work but only the M-protein was being followed. Don't get me started on that.) All this is background info; I have told you the details in earlier posts.
Today, as we had been told on the phone, Dr. M said that Doug needs to go back on chemo to try to get this under control. Doug will go back on the same drugs that controlled the myeloma in the first place. The drugs that he took before the stem cell transplant: Revlimid and Dexamethasone. He had a good response to the drugs in 2008. Both these are in pill form and can be taken at home. That's good.
The Revlimid is a highly controlled drug, also a very expensive drug. We have applied for a grant that would help cover the expense, since even with insurance out of pocket costs are high.
Dr. M also recommended that Doug go back on Zometa (a biophosphanate drug to strengthen bone - not a chemo drug). Zometa is given via IV at the local hospital. We were told that there is a higher risk, now that Doug has already had two years of Zometa, of necrosis of the jaw. Just a quirky little possible side effect. Necrosis is bone death; if that happens it would probably entail major surgery of the jaw bone. It is a low probability. The benefit/risk ratio favors going ahead and doing the Zometa. The aim of Zometa is to strengthen bones and prevent more lesions in the bone, and prevent possible fractures. The first time around Doug got Zometa every month - this time it will be every six weeks.
Dr. M also ordered a 'skeletal survey' to be done. Basically plain x-rays of the bones most likely to be involved - skull, pelvis, spine, long bones of arms and legs. This will be done next week, and will show if there are any lesions present now that are not symptomatic yet.
Doug will get two cycles of Rev/Dex chemo (two months) and then will get re-evaluated to see if there is a response. If yes, great news. If not, we will seek a second opinion and formulate a Plan B.
That's the news for now. I am glad to be taking action to fight this disease. Our spirits remain high.
"May the God of hope fill you with all joy and peace as you trust in him." Romans 15:13
Today, as we had been told on the phone, Dr. M said that Doug needs to go back on chemo to try to get this under control. Doug will go back on the same drugs that controlled the myeloma in the first place. The drugs that he took before the stem cell transplant: Revlimid and Dexamethasone. He had a good response to the drugs in 2008. Both these are in pill form and can be taken at home. That's good.
The Revlimid is a highly controlled drug, also a very expensive drug. We have applied for a grant that would help cover the expense, since even with insurance out of pocket costs are high.
Dr. M also recommended that Doug go back on Zometa (a biophosphanate drug to strengthen bone - not a chemo drug). Zometa is given via IV at the local hospital. We were told that there is a higher risk, now that Doug has already had two years of Zometa, of necrosis of the jaw. Just a quirky little possible side effect. Necrosis is bone death; if that happens it would probably entail major surgery of the jaw bone. It is a low probability. The benefit/risk ratio favors going ahead and doing the Zometa. The aim of Zometa is to strengthen bones and prevent more lesions in the bone, and prevent possible fractures. The first time around Doug got Zometa every month - this time it will be every six weeks.
Dr. M also ordered a 'skeletal survey' to be done. Basically plain x-rays of the bones most likely to be involved - skull, pelvis, spine, long bones of arms and legs. This will be done next week, and will show if there are any lesions present now that are not symptomatic yet.
Doug will get two cycles of Rev/Dex chemo (two months) and then will get re-evaluated to see if there is a response. If yes, great news. If not, we will seek a second opinion and formulate a Plan B.
That's the news for now. I am glad to be taking action to fight this disease. Our spirits remain high.
"May the God of hope fill you with all joy and peace as you trust in him." Romans 15:13
Saturday, November 26, 2011
Thanksgiving Day; more info
We had a wonderful Thanksgiving with family. We went to Pueblo CO which is a 2.5 hour drive from our house. Dinner was at our daughter in law's parents home. We really enjoyed spending time with our son and daughter in law, and all five of our grandkids. They range in age from 15 to 19; one set of twins. Great kids. It was a super day but tiring.
Doug is still having some hip pain. At first the decrease in pain from the radiation was dramatic; the lingering pain is not good, but we hope it will go away. Doug plans to get a handicapped parking permit, as he can only walk a short distance before hurting. Even standing for long hurts.
I found a couple of scientific papers on light chain disease. Here is an excerpt from one:
"Up to 20 percent of patients have a minimally elevated (less than 1 g per dL [10 g per L]) or normal serum γ-globulin level; the latter group has elevated urine excretion of light chains (κ or λ), which is often called Bence Jones myeloma. The type and amount of urine monoclonal light chains are typically measured with urine protein immunofixation. There is an even smaller subgroup (3 percent of multiple myeloma cases) with undetectable serum or urine M proteins on electrophoresis or immunofixation. This subgroup, called nonsecretory multiple myeloma, is diagnosed in patients with an abnormal serum free light chain ratio."
Doug is still having some hip pain. At first the decrease in pain from the radiation was dramatic; the lingering pain is not good, but we hope it will go away. Doug plans to get a handicapped parking permit, as he can only walk a short distance before hurting. Even standing for long hurts.
I found a couple of scientific papers on light chain disease. Here is an excerpt from one:
"Up to 20 percent of patients have a minimally elevated (less than 1 g per dL [10 g per L]) or normal serum γ-globulin level; the latter group has elevated urine excretion of light chains (κ or λ), which is often called Bence Jones myeloma. The type and amount of urine monoclonal light chains are typically measured with urine protein immunofixation. There is an even smaller subgroup (3 percent of multiple myeloma cases) with undetectable serum or urine M proteins on electrophoresis or immunofixation. This subgroup, called nonsecretory multiple myeloma, is diagnosed in patients with an abnormal serum free light chain ratio."
Sorry for the technical language, but I think some of the blog followers are myeloma patients and might appreciate the information. I don't believe everything I find on the web and am careful to seek only the .gov or .edu sites. I didn't find the Multiple Myeloma News to be very helpful, nor was the International Multiple Myeloma Foundation (myeloma.org). Doug falls into the 3% subgroup; that helps explain the lack of information out there.
Correction: on 12-2-11 when we saw Dr. Matous for the second opinion, he said the correct term for what Doug has now is "Lambda Light Chain Myeloma", and 15% of myeloma patients are in this group.
Another paper says: "Light chains can cause a rapid decline of renal (kidney) function as most light chains are quickly filtered by the kidneys." The word "can" does not mean "will"!
We are blessed to have strong faith and a personal relationship with God. I will close with this quote:
Correction: on 12-2-11 when we saw Dr. Matous for the second opinion, he said the correct term for what Doug has now is "Lambda Light Chain Myeloma", and 15% of myeloma patients are in this group.
Another paper says: "Light chains can cause a rapid decline of renal (kidney) function as most light chains are quickly filtered by the kidneys." The word "can" does not mean "will"!
We are blessed to have strong faith and a personal relationship with God. I will close with this quote:
"When we come to the
edge of the light we know, and are about to step off into the darkness of the
unknown, of this we can be sure. Either God will provide something solid to
stand on or .... We will be taught to fly." unknown author
Monday, November 21, 2011
Light Chain Disease, Last Radiation Tx
Today was Doug's last radiation treatment to his left hip. The radiation has helped so much with the pain. What a relief!
We got the results from the blood test that was ordered last Friday; Doug's calcium level is normal. That is good news.
We received another email from the clinical research nurse -- due to the "light chain disease", Doug is not eligible for any trials. Kind of a bummer that he won't have access to an investigational drug, but there are powerful drugs already on the market. There was only a 50% chance that he would actually get the new drug in the study anyway.
I found a little more about light chain disease in MM. There doesn't seem to be much information out there for the layman.
"Multiple Myeloma is a cancer of a type of white blood cells called plasma cells. These cells come from the bone marrow and produce antibodies (or immunoglobulin) that are important in fighting infections. In Myeloma, the abnormal plasma cells produce too much of one type of immunoglobulin called the M-protein. (Because of a mutation, Doug now has no M-protein showing in his blood tests, but he did at diagnosis.) A complete antibody molecule is made of both "heavy chains" and "light chains". If the malignant cells produce only the light chain part of the antibody, the patient has "light chain disease".
I don't know yet what impact the light chain disease mutation will have on Doug's prognosis. Quality of life is excellent now, and we intend to enjoy it.
To get down to basics, all any of us has is today -- who knows what tomorrow will bring.
We wish you all a
We got the results from the blood test that was ordered last Friday; Doug's calcium level is normal. That is good news.
We received another email from the clinical research nurse -- due to the "light chain disease", Doug is not eligible for any trials. Kind of a bummer that he won't have access to an investigational drug, but there are powerful drugs already on the market. There was only a 50% chance that he would actually get the new drug in the study anyway.
I found a little more about light chain disease in MM. There doesn't seem to be much information out there for the layman.
"Multiple Myeloma is a cancer of a type of white blood cells called plasma cells. These cells come from the bone marrow and produce antibodies (or immunoglobulin) that are important in fighting infections. In Myeloma, the abnormal plasma cells produce too much of one type of immunoglobulin called the M-protein. (Because of a mutation, Doug now has no M-protein showing in his blood tests, but he did at diagnosis.) A complete antibody molecule is made of both "heavy chains" and "light chains". If the malignant cells produce only the light chain part of the antibody, the patient has "light chain disease".
I don't know yet what impact the light chain disease mutation will have on Doug's prognosis. Quality of life is excellent now, and we intend to enjoy it.
To get down to basics, all any of us has is today -- who knows what tomorrow will bring.
We wish you all a
Saturday, November 19, 2011
Not Eligible for Clinical Trial
We are home! We picked Chester up from the kennel yesterday late afternoon. He was fit as a fiddle, happy and well fed. I know I've mentioned it before, but we just can't say enough good things about Patti and Mike Bondurant. Patti gave Chester a bath and said she thinks he is part German Shepherd - from all his hair and because of the way he was barking at all the big dogs. Chester told me he just doesn't know how they can run the kennel without him.
We go back for Doug's last radiation treatment Monday, but we'll make it a day trip, and take Chester with us. He's good in the car.
Our computer stopped working last Thursday while we were still in Edwards. As soon as we got home, we took it to Kelly, our trusted computer repair person. For now we are using the old computer - and thankful it still works.
In the last post I mentioned we were going to look into a clinical trial for Doug. I didn't want to wait until our appointment with the oncologist, so I emailed the clinical research nurse. This morning when we booted up the old computer, there was an answer from her. Doug does not qualify. She said:
"To qualify for this trial, he would need to have an M-protein of at least 0.5, and according to the labs and notes I received from your oncologist's office, your husband does not currently have any m-protein in his blood—he has light chain only disease."
We are disappointed; I was hoping Doug would have a chance at the new investigational drug.
I did reply and ask if there is another trial he might be eligible for. If not, Doug will go back on the original drugs that put him in the first remission. I really hate waiting - I want him on chemo NOW. Our appointment with the oncologist isn't until Nov 30.
Doug still takes the pain med when needed, but if he isn't too active, he doesn't hurt. He is having some nausea; it is not from the radiation (only his hip is being treated, far away from his stomach). Dr. Hardenberg is wondering if it is from elevated calcium level, so she ordered a CBC and chem. blood test. With Multiple Myeloma, calcium can leach out from the bones into the blood. Not a good thing, but treatable. We won't get those results until Monday. Did I say I hate waiting?
I got a wonderful gift from a dear friend -- the daily devotional "Jesus Calling" by Sarah Young . I highly recommend it; the readings are so comforting. Here is a portion of today's:
Leave outcomes up to Me. Follow wherever I lead, without worrying about how it will all turn out. Live in the now, concentrating on staying in step with Me.When our path leads to a cliff, be willing to climb it with My help. When we come to a resting place, take time to be refreshed in My Presence.
We go back for Doug's last radiation treatment Monday, but we'll make it a day trip, and take Chester with us. He's good in the car.
Our computer stopped working last Thursday while we were still in Edwards. As soon as we got home, we took it to Kelly, our trusted computer repair person. For now we are using the old computer - and thankful it still works.
In the last post I mentioned we were going to look into a clinical trial for Doug. I didn't want to wait until our appointment with the oncologist, so I emailed the clinical research nurse. This morning when we booted up the old computer, there was an answer from her. Doug does not qualify. She said:
"To qualify for this trial, he would need to have an M-protein of at least 0.5, and according to the labs and notes I received from your oncologist's office, your husband does not currently have any m-protein in his blood—he has light chain only disease."
We are disappointed; I was hoping Doug would have a chance at the new investigational drug.
I did reply and ask if there is another trial he might be eligible for. If not, Doug will go back on the original drugs that put him in the first remission. I really hate waiting - I want him on chemo NOW. Our appointment with the oncologist isn't until Nov 30.
Doug still takes the pain med when needed, but if he isn't too active, he doesn't hurt. He is having some nausea; it is not from the radiation (only his hip is being treated, far away from his stomach). Dr. Hardenberg is wondering if it is from elevated calcium level, so she ordered a CBC and chem. blood test. With Multiple Myeloma, calcium can leach out from the bones into the blood. Not a good thing, but treatable. We won't get those results until Monday. Did I say I hate waiting?
I got a wonderful gift from a dear friend -- the daily devotional "Jesus Calling" by Sarah Young . I highly recommend it; the readings are so comforting. Here is a portion of today's:
Leave outcomes up to Me. Follow wherever I lead, without worrying about how it will all turn out. Live in the now, concentrating on staying in step with Me.When our path leads to a cliff, be willing to climb it with My help. When we come to a resting place, take time to be refreshed in My Presence.
Tuesday, November 15, 2011
Cancer Support Group
Our drive back to Edwards yesterday was uneventful. We've been fortunate in travel conditions. Today will be radiation treatment number six and things are going well. Doug has taken no pain meds today - yea!
Today at noon we had a cancer support group here at Jack's Place. Two couples, including us, and two women attended. A social worker with nursing background (or the other way around) lead the group - we all introduced ourselves and told why we are here. One guy told of an 'out of body' near death experience he had ten years ago. He described it as a textbook case: he was up above his body and could see everything. He said he felt an absolute calm, peace, and joy before he returned to his body -- and that now he has no fear of death. Several of us said how we found it very comforting to know that this life is not the "real" one.
I have been guilty of letting my mind run ahead too much -- looking too far ahead in the future and anticipating problems. That's not good.
“Worrying does not empty tomorrow of its troubles; it empties today of its strength.” unknown
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."
Matt 6:34 The Message
Beautiful thought, just what I needed.
At the support group today we learned of a clinical trial for relapsed myeloma. It is a study of an investigational new drug - carfilzomib. Definitely something we will look into when we see the oncologist.
Stay strong, all of you!
Love to all.
Today at noon we had a cancer support group here at Jack's Place. Two couples, including us, and two women attended. A social worker with nursing background (or the other way around) lead the group - we all introduced ourselves and told why we are here. One guy told of an 'out of body' near death experience he had ten years ago. He described it as a textbook case: he was up above his body and could see everything. He said he felt an absolute calm, peace, and joy before he returned to his body -- and that now he has no fear of death. Several of us said how we found it very comforting to know that this life is not the "real" one.
I have been guilty of letting my mind run ahead too much -- looking too far ahead in the future and anticipating problems. That's not good.
“Worrying does not empty tomorrow of its troubles; it empties today of its strength.” unknown
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."
Matt 6:34 The Message
Beautiful thought, just what I needed.
At the support group today we learned of a clinical trial for relapsed myeloma. It is a study of an investigational new drug - carfilzomib. Definitely something we will look into when we see the oncologist.
Stay strong, all of you!
Love to all.
Sunday, November 13, 2011
Restful Sunday - Less Pain
Doug and I went to church today; it was such a joy to be there, hear God's word and get to see so many good friends. Clearview church in Buena Vista CO is truly a wonderful, awesome, loving church. Clearview members go the extra mile to care for one another in so many ways. We just are so blessed.
Doug's hip pain is so much better today. He's still taking the oxycodone and Ativan, and resting a lot.
The weather is chilly and blustery, but we are so cozy snuggled up at home, and happy to be here.
Love to all.
God doesn't promise security FROM life's storms but security IN life's storms. unknown
Doug's hip pain is so much better today. He's still taking the oxycodone and Ativan, and resting a lot.
The weather is chilly and blustery, but we are so cozy snuggled up at home, and happy to be here.
Love to all.
God doesn't promise security FROM life's storms but security IN life's storms. unknown
Friday, November 11, 2011
Home for the Weekend
We are home in Buena Vista for the weekend. Doug wanted to drive home as he felt pretty good; he did fine - it takes us about one hour and 45 minutes. It was beautiful travel weather. It feels so good to be home and relax for a couple of days.
Three different people brought food to us today. We are so very blessed with such friends who pray and care for us.
I called the kennel; they said Chester is doing very well. He dragged one of his blankets out through the doggie door and laid outside in the sunshine. The gal said she went out to see if he was cold and his ears were warm. He's eating well, so we decided to leave him there and not bring him home for just a couple of days, then have to take him back.
Here's a picture of Chester, all 7 pounds of him. He looks angelic but don't let that fool you.
"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul, and forget not all his benefits."
Psalm 103:1-2
Three different people brought food to us today. We are so very blessed with such friends who pray and care for us.
I called the kennel; they said Chester is doing very well. He dragged one of his blankets out through the doggie door and laid outside in the sunshine. The gal said she went out to see if he was cold and his ears were warm. He's eating well, so we decided to leave him there and not bring him home for just a couple of days, then have to take him back.
Here's a picture of Chester, all 7 pounds of him. He looks angelic but don't let that fool you.
"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul, and forget not all his benefits."
Psalm 103:1-2
Thursday, November 10, 2011
Better
Well I didn't call the rescue squad last night, but today I called the God Squad. The Triple Braid prayer warriors prayed for me and for Doug. Many others are praying for us also. God does provide. I feel much calmer.
Nurse Susan called back - Dr. H, the radiation oncologist wrote a prescription for Ativan, for nausea and anxiety. Doug feels much better and ate a little. I am a stress eater, so no worries there. Chocolate is my drug of choice. Could be worse!
Thanks to all who pray for us.
May the God of hope fill you with all joy and peace as you trust in him. Romans 15:13
Nurse Susan called back - Dr. H, the radiation oncologist wrote a prescription for Ativan, for nausea and anxiety. Doug feels much better and ate a little. I am a stress eater, so no worries there. Chocolate is my drug of choice. Could be worse!
Thanks to all who pray for us.
May the God of hope fill you with all joy and peace as you trust in him. Romans 15:13
Rough Night
Last night was really rough. At 6 pm Doug said his pain level was a 10. He took his first dose of Oxycontin, the newly prescribed pain med.
He laid down at 9 pm - by 10 pm he was feeling very uncomfortable - clammy, dizzy, feeling "disconnected", slight nausea, anxiety, did not feel he could lie flat. I propped him up on pillows and he dozed on and off but neither of us got much sleep. At 4 am he said to me "Call the squad" -- I checked him and decided that was coming from the anxiety - I did not call the squad, but reassured him he would be okay and he was feeling side effects, nothing more. At 8 am when the oncology dept opened, we went over to have his blood pressure checked and talked to the nurse. His BP was okay by then and he was feeling much better. Susan, the nurse, reafirmed that what he was experiencing was side effects, but she was surprised that one dose did that. She said he should go back to just taking the oxycodone for now.
Tomorrow is the day Dr. Hardenbergh will see Doug. Susan said they would come up with some other pain med to try. They really want him on some form of long-acting pain med and I agree. I've been nagging at him to take his pain med on a regular schedule before the pain gets too bad but he still waits too long. Stubborn men!
Doug is dozing now. I am waiting for Susan to call me back, as Doug wants something for nausea so he can eat.
I'm really tired and close to tears but holding together. I know God is good and He will provide.
He laid down at 9 pm - by 10 pm he was feeling very uncomfortable - clammy, dizzy, feeling "disconnected", slight nausea, anxiety, did not feel he could lie flat. I propped him up on pillows and he dozed on and off but neither of us got much sleep. At 4 am he said to me "Call the squad" -- I checked him and decided that was coming from the anxiety - I did not call the squad, but reassured him he would be okay and he was feeling side effects, nothing more. At 8 am when the oncology dept opened, we went over to have his blood pressure checked and talked to the nurse. His BP was okay by then and he was feeling much better. Susan, the nurse, reafirmed that what he was experiencing was side effects, but she was surprised that one dose did that. She said he should go back to just taking the oxycodone for now.
Tomorrow is the day Dr. Hardenbergh will see Doug. Susan said they would come up with some other pain med to try. They really want him on some form of long-acting pain med and I agree. I've been nagging at him to take his pain med on a regular schedule before the pain gets too bad but he still waits too long. Stubborn men!
Doug is dozing now. I am waiting for Susan to call me back, as Doug wants something for nausea so he can eat.
I'm really tired and close to tears but holding together. I know God is good and He will provide.
Wednesday, November 9, 2011
Jack's Place
My clever friend Barb suggested that we could post photos by inserting the camera SD card directly into the slot on the computer. (Remember that we forgot to bring the cable that connects camera to computer.) So now I can show you some photos of where we are staying.
Jack's Place is right across the parking lot from Shaw Cancer Center in Edwards CO. Jack's has 12 private patient rooms and several communal shared spaces. Jack's has a "pay-as-you-are-able" philosophy -- suggested fee is $25 a day (for rooms that would cost around $300 a day in this area), but no one is ever turned away.
Each room has a private bathroom, tv/dvd player, small table and two chairs and a small refrigerator for drinks.
Here is the dining and sitting area. There are several tables. Eating in rooms is not allowed.
This is the kitchen we all share. We pick a section of one of two fridges to store our food; there is freezer space too. On the opposite wall are 12 cupboards - one for each room, to store other food items. We have two microwaves, two dishwashers, coffee maker, plus gas stove and oven. Dishes, pots and pans are supplied. We all clean up after ourselves.
Here is the downstairs game room with big screen tv and fireplace.
This is our library - lots of good books as well as audiobooks. I am currently reading a book I found here: The Art of Racing in the Rain by Garth Stein. Wonderful book! The library also has a computer and printer that we can use.
The sunroom faces southwest - a nice spot to sit in the morning. There is an outside patio through french doors from the sunroom.
I didn't get a picture of the laundry room that has two washers and four dryers.
If we can't be home, Jack's Place is a fine place to be. But we would much rather be home.
Jack's Place is right across the parking lot from Shaw Cancer Center in Edwards CO. Jack's has 12 private patient rooms and several communal shared spaces. Jack's has a "pay-as-you-are-able" philosophy -- suggested fee is $25 a day (for rooms that would cost around $300 a day in this area), but no one is ever turned away.
Here is the downstairs game room with big screen tv and fireplace.
This is our library - lots of good books as well as audiobooks. I am currently reading a book I found here: The Art of Racing in the Rain by Garth Stein. Wonderful book! The library also has a computer and printer that we can use.
The sunroom faces southwest - a nice spot to sit in the morning. There is an outside patio through french doors from the sunroom.
I didn't get a picture of the laundry room that has two washers and four dryers.
If we can't be home, Jack's Place is a fine place to be. But we would much rather be home.
New Pain Med
This afternoon the pharmacy called - all the insurance requirements have been met and they could fill the prescription for Oxycontin. So we went and picked it up at 3:30. Even with the insurance kicking in, it was $80 for our co-pay. It is Oxycontin 20 mg. Sure hope it works. Mornings are the best time for Doug; after laying quietly in bed he doesn't have much pain. At 6:00 pm Doug said his pain level was a 10 out of 10. The Oxycontin is a time-release tablet, so he only has to take it every 12 hours. He has also started on Miralax since the pain meds have a constipating effect.
Doug has been doing all the driving since we got here. He loves driving and doesn't like to be in the passenger seat. But this new pain med could make him too drowsy to drive - I'd better get familiar with these roads. We are very close to I-70 (its right outside our window) but we've been using Hwy 6 to get to Avon from Edwards. There are almost no normal intersections here; it's all roundabouts. It can be confusing to find the right road.
Late this afternoon one of the Pet Partner teams showed up in the commons area. Korsack is an Italian Greyhound and her partner is Jeanne. Korsack curled up in Doug's lap after making the rounds to meet everyone. Dogs have such a peaceful calming influence.
Doug has been doing all the driving since we got here. He loves driving and doesn't like to be in the passenger seat. But this new pain med could make him too drowsy to drive - I'd better get familiar with these roads. We are very close to I-70 (its right outside our window) but we've been using Hwy 6 to get to Avon from Edwards. There are almost no normal intersections here; it's all roundabouts. It can be confusing to find the right road.
Late this afternoon one of the Pet Partner teams showed up in the commons area. Korsack is an Italian Greyhound and her partner is Jeanne. Korsack curled up in Doug's lap after making the rounds to meet everyone. Dogs have such a peaceful calming influence.
Gratitudes and Pet Partners
It is a sunny morning here in Edwards CO. Doug had his second radiation treatment this morning, and this time the therapists invited me back to watch. This was a special perk because I am a retired radiation therapist. Their machine and computer system is exactly like what I used to work with. I almost felt like I was back at work. The patient area is welcoming and nicely decorated - including three large lovely bronze sculptures, no doubt donated.
Jack's Place, our temporary residence, has a visiting therapy dog program. The dogs are registered with the Delta Society Pet Partners. I had a wonderful Rottweiler, Leonard, who was also a DS Pet Partner! I know the dedication and extensive training and testing these teams undergo. Leonard and I worked mostly with kids - he was a wonderful Reading Dog. We volunteered at our local library back in Nebraska; Leonard was the first dog in the Paws for Books program. Leonard loved everyone. Sadly he died in 2008 but there are many happy memories.
We got to meet one of the Pet Parner teams here. Gracie is a JRT who is happy and friendly. Doug has requested another visit from Gracie and her mom.
I got to thinking this morning how blessed I am. Following are some gratitudes, in no particular order:
A husband who prays
I am a beloved child of God
Our wonderful daughter in law
My loving sister and brother in law
Our trusty little car
Living in Buena Vista CO
Our church family
Good neighbors
I am retired so I don’t have to split my time between work and Doug
The caring people at the boarding kennel
The Lord who keeps me strong
Five healthy grandkids
Dogs and their unconditional love
My Bible
Bible studies
Thrift stores
Books
Love to all.
Jack's Place, our temporary residence, has a visiting therapy dog program. The dogs are registered with the Delta Society Pet Partners. I had a wonderful Rottweiler, Leonard, who was also a DS Pet Partner! I know the dedication and extensive training and testing these teams undergo. Leonard and I worked mostly with kids - he was a wonderful Reading Dog. We volunteered at our local library back in Nebraska; Leonard was the first dog in the Paws for Books program. Leonard loved everyone. Sadly he died in 2008 but there are many happy memories.
We got to meet one of the Pet Parner teams here. Gracie is a JRT who is happy and friendly. Doug has requested another visit from Gracie and her mom.
I got to thinking this morning how blessed I am. Following are some gratitudes, in no particular order:
A husband who prays
I am a beloved child of God
So many
people who keep us in their prayers
My husband
who never complains even when he is in pain
Jack’s Place where we can stay during radiation treatment
Our son who
is an excellent father to our grandchildrenJack’s Place where we can stay during radiation treatment
Our wonderful daughter in law
My loving sister and brother in law
Our trusty little car
Living in Buena Vista CO
Our church family
Good neighbors
I am retired so I don’t have to split my time between work and Doug
The caring people at the boarding kennel
The Lord who keeps me strong
Five healthy grandkids
Dogs and their unconditional love
My Bible
Bible studies
Thrift stores
Clean clothes
Opportunities
to help othersBooks
I'm sure I could go on and on, but these will do for now.
Love to all.
Tuesday, November 8, 2011
First Radiation Treatment
We went out this morning to pick up a few things we had not brought with us. We drove around Edwards and Avon to familiarize ourselves with the area. Doug waited in the car while I shopped.
The oncology nurse, Sue, called in the early afternoon to say that Dr. Hardenbergh had written a new prescription for pain meds and gave us a time to pick it up at the dept. and talk to her. She said she didn't think they had things ready for Doug's treatment yet. We came back to our room to relax and an hour later we got a call -- Doug would get his first treatment at 5:15. Good! We appreciate Dr. H. getting the ball rolling and not waiting until tomorrow. Two people had to stay overtime but they are professionals and it comes with the territory. Good people.
After the treatment it was dark out, but we wanted to fill the script. So off we went to City Market pharmacy. We didn't get it filled. The script was for Oxycontin, a high strength time-release form of Oxycodone. The pharmacist said the insurance company requires pre-approval for this drug. The physician needs to send forms to the insurance and even then there is a possibility they could deny it. Of course we could pay for it out of pocket -- to the tune of $260. For now Doug will continue with the Oxycodone and he can double up on it if he needs to. And the nurse convinced him to take it on a regular schedule - and not to wait until he hurts. (I had already told him that -- grrgh.)
We have met several other people who are staying here at Jack's Place. One guy is almost finished with his course of treatment - after five weeks. I'm glad we won't need to stay that long. Looks like Doug's last treatment will be Monday the 21st.
Thanks for all the helpful comments, encouragements and prayers! God is good. We are blessed.
Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10
The oncology nurse, Sue, called in the early afternoon to say that Dr. Hardenbergh had written a new prescription for pain meds and gave us a time to pick it up at the dept. and talk to her. She said she didn't think they had things ready for Doug's treatment yet. We came back to our room to relax and an hour later we got a call -- Doug would get his first treatment at 5:15. Good! We appreciate Dr. H. getting the ball rolling and not waiting until tomorrow. Two people had to stay overtime but they are professionals and it comes with the territory. Good people.
After the treatment it was dark out, but we wanted to fill the script. So off we went to City Market pharmacy. We didn't get it filled. The script was for Oxycontin, a high strength time-release form of Oxycodone. The pharmacist said the insurance company requires pre-approval for this drug. The physician needs to send forms to the insurance and even then there is a possibility they could deny it. Of course we could pay for it out of pocket -- to the tune of $260. For now Doug will continue with the Oxycodone and he can double up on it if he needs to. And the nurse convinced him to take it on a regular schedule - and not to wait until he hurts. (I had already told him that -- grrgh.)
We have met several other people who are staying here at Jack's Place. One guy is almost finished with his course of treatment - after five weeks. I'm glad we won't need to stay that long. Looks like Doug's last treatment will be Monday the 21st.
Thanks for all the helpful comments, encouragements and prayers! God is good. We are blessed.
Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. – Isaiah 41:10
Monday, November 7, 2011
Radiation Therapy
Today has been busy. We left home at 7:30 to take Chester to the boarding kennel. Mike, one of the owners, was there and he remembered us from the previous time we had to leave Chester and Piper for two months, when Doug went through the transplant. Mike said that since we were leaving Chester for medical reasons again, he would only charge us $10 a day. And he said we shouldn't worry about how long we needed to be gone; although they were booked solid over Thanksgiving, they would put Chester up front in the office if need be. This is an answer to prayer right there. This is WagnTails kennel in Salida -- Mike and Patty Bondurant are wonderful people.
We had good driving conditions to Shaw Cancer Center. We got here in plenty of time to get checked in to our 'home away from home', Jack's Place. It is just across a parking lot from the cancer center. We have a nice hotel-like room. Jack's has a community kitchen and dining area. Everyone brings their own food - we have a cupboard just for us and use of a refrigerator. I have taken photos, but we forgot to bring the cable that connects the camera to the computer!
At 1:15, we had the consult with Dr. Patricia Hardenbergh, the radiation oncologist. She showed us the CT scan from Oct. 31; we could see quite a few "holes" in Doug's left hip and pelvis. No wonder he hurts! She is going to radiate the whole left side and part of the femur. Doug will have ten treatments.
If there is any good side to MM, it is the sensitivity to radiation. The downside is - radiation to this disease is only palliative -- used to control pain and stop further bone erosion in the treated area, not to achieve a cure. MM affects the whole body and radiation is a local treatment. Whole body radiation would be lethal. Radiation therapy can cure cancers that are localized.
I am a retired radiation therapist -- I used to give radiation treatments. Now I am on the other side.
Dr. H. also showed us the plain x-ray of Doug's pelvis taken Oct 19. The radiologist who read that film reported it as negative - meaning nothing found. However, when Dr. H. showed us, she pointed out several suspicious areas. Even Doug and I could see. Doctors almost never criticize each other, but Dr. H. did admit that it was "under-read". That is troubling; how many other things have been missed by that radiologist? If he (or she) had been more competent, Doug might have been spared the additional week of pain, but the end result would still be the same. It makes me mad, but Doug says he won't let it upset him.
After the consult, we came back 'home' to rest, then back to the radiation dept. for simulation. This the time of mapping out the area on Doug's body; done with a CT scanner. This information is then entered into the treatment planning computer by the dosimetrist to explore the various ways the radiation beam can be configured to minimize hitting organs in the area. Then the doc - the radiation oncologist - looks at the plans and chooses which one to use.
Radiation oncology is really a team effort -- the secretary, the nurse, radiation therapists who position the patient and operate the treatment machine, dosimetrist who does the treatment planning, and the radiation oncologist (physician). Plus the radiation physicist who calibrates the machines.
A large part of Doug's pelvis is involved, so some bowel will get radiated. It shouldn't cause him any major side effects; maybe a little diarrhea, or if lucky, maybe not.
I asked Dr. Hardenbergh about the "Light Chain Disease" label. She said "it is still multiple myeloma." She said it could be considered a 'mutation', since the usual marker for myeloma still comes back as 'no evidence of myeloma'. I looked back at my old notebooks and back in April 2010, at the one year post transplant visit -- Dr. Jeff Matous, the transplant doc (and our hero), reported "Light chain looks good". I recorded the Lamba light chain as 11 at that time with the comment 'excellent'.
I looked back at the most recent lab report of 10-6-11. The light chain is on page four, not highlighted, and was 47.3! I then looked back at the lab report of 7-5-11, and it lists the lambda light chain as 41.3. There was obviously an upward trend. Why was this not noticed? This pisses me off. I plan to ask some questions when we see the medical oncologist - not to accuse so much as to maybe help someone in the future.
Doug has such a marvelous attitude so I need to control myself. But if the light chain rise had been noticed earlier, we could have started back on chemo sooner.
Tomorrow we hope to get the first radiation treatment, if the team gets everything ready by then. We are both exhausted. Because of all the walking to and from today, I got a wheelchair for Doug. The fact that he actually rode in it tells you how much he hurts, even with the pain meds.
We are bouyed up by all the prayers being said for us.
Love to all.
We had good driving conditions to Shaw Cancer Center. We got here in plenty of time to get checked in to our 'home away from home', Jack's Place. It is just across a parking lot from the cancer center. We have a nice hotel-like room. Jack's has a community kitchen and dining area. Everyone brings their own food - we have a cupboard just for us and use of a refrigerator. I have taken photos, but we forgot to bring the cable that connects the camera to the computer!
At 1:15, we had the consult with Dr. Patricia Hardenbergh, the radiation oncologist. She showed us the CT scan from Oct. 31; we could see quite a few "holes" in Doug's left hip and pelvis. No wonder he hurts! She is going to radiate the whole left side and part of the femur. Doug will have ten treatments.
If there is any good side to MM, it is the sensitivity to radiation. The downside is - radiation to this disease is only palliative -- used to control pain and stop further bone erosion in the treated area, not to achieve a cure. MM affects the whole body and radiation is a local treatment. Whole body radiation would be lethal. Radiation therapy can cure cancers that are localized.
I am a retired radiation therapist -- I used to give radiation treatments. Now I am on the other side.
Dr. H. also showed us the plain x-ray of Doug's pelvis taken Oct 19. The radiologist who read that film reported it as negative - meaning nothing found. However, when Dr. H. showed us, she pointed out several suspicious areas. Even Doug and I could see. Doctors almost never criticize each other, but Dr. H. did admit that it was "under-read". That is troubling; how many other things have been missed by that radiologist? If he (or she) had been more competent, Doug might have been spared the additional week of pain, but the end result would still be the same. It makes me mad, but Doug says he won't let it upset him.
After the consult, we came back 'home' to rest, then back to the radiation dept. for simulation. This the time of mapping out the area on Doug's body; done with a CT scanner. This information is then entered into the treatment planning computer by the dosimetrist to explore the various ways the radiation beam can be configured to minimize hitting organs in the area. Then the doc - the radiation oncologist - looks at the plans and chooses which one to use.
Radiation oncology is really a team effort -- the secretary, the nurse, radiation therapists who position the patient and operate the treatment machine, dosimetrist who does the treatment planning, and the radiation oncologist (physician). Plus the radiation physicist who calibrates the machines.
A large part of Doug's pelvis is involved, so some bowel will get radiated. It shouldn't cause him any major side effects; maybe a little diarrhea, or if lucky, maybe not.
I asked Dr. Hardenbergh about the "Light Chain Disease" label. She said "it is still multiple myeloma." She said it could be considered a 'mutation', since the usual marker for myeloma still comes back as 'no evidence of myeloma'. I looked back at my old notebooks and back in April 2010, at the one year post transplant visit -- Dr. Jeff Matous, the transplant doc (and our hero), reported "Light chain looks good". I recorded the Lamba light chain as 11 at that time with the comment 'excellent'.
I looked back at the most recent lab report of 10-6-11. The light chain is on page four, not highlighted, and was 47.3! I then looked back at the lab report of 7-5-11, and it lists the lambda light chain as 41.3. There was obviously an upward trend. Why was this not noticed? This pisses me off. I plan to ask some questions when we see the medical oncologist - not to accuse so much as to maybe help someone in the future.
Doug has such a marvelous attitude so I need to control myself. But if the light chain rise had been noticed earlier, we could have started back on chemo sooner.
Tomorrow we hope to get the first radiation treatment, if the team gets everything ready by then. We are both exhausted. Because of all the walking to and from today, I got a wheelchair for Doug. The fact that he actually rode in it tells you how much he hurts, even with the pain meds.
We are bouyed up by all the prayers being said for us.
Love to all.
Saturday, November 5, 2011
Heading for Radiation
We did not go to the orthopedic consult. Dr. Myers called to tell us that he had spoken with Dr. Hunter. Hunter looked at the CT scan and said there was nothing he needed to do -- that Doug should go directly for Radiation Therapy. So early Monday morning, we will take Chester to the boarding kennel and head to the Shaw Cancer Center.
Wednesday, November 2, 2011
End of Remission
This afternoon Dr. Myers, the oncologist called. He said that he was musing on Doug's hip pain, and went back and looked closely at Doug's blood work. While it is correct that there is no sign of MM spike, the lab tests show a slow rise in light chains. "Light chain disorder" is what Dr. Myers calls it. He consulted with Dr. Matous, a MM expert who was Doug's stem cell transplant physician in Denver. Dr. Myers explained that Light Chain Disorder is a cousin of Multiple Myeloma, and is now "rearing its ugly head". So the cancer is back. Quite a shock, after being told just a week ago that Doug was still in remission.
Both docs think Doug needs to go back on Revlimid - the drug that helped so much in the very beginning.
We will keep the appointment to see the orthopod tomorrow, as something needs to be done regarding the hip area. Not only to relieve pain, but also to prevent possible fractures, which could happen because of the bone lesions.
So it seems the merry-go-round is starting. All we can do is take it one step at a time, and trust the Lord to guide us.
Both docs think Doug needs to go back on Revlimid - the drug that helped so much in the very beginning.
We will keep the appointment to see the orthopod tomorrow, as something needs to be done regarding the hip area. Not only to relieve pain, but also to prevent possible fractures, which could happen because of the bone lesions.
So it seems the merry-go-round is starting. All we can do is take it one step at a time, and trust the Lord to guide us.
Hip Pain
First the good news: Last week Doug had his regular (four times a year) checkup with Dr. Myers, his oncologist. The MM panel shows no MM protein in the blood. Yea! Still in remission. Praise God.
Now the hip pain. Since last June or before, Doug has had intermittant left hip pain. He tried a series of chiropractic treatments which did not help. He tried a series of four accupuncture treatments in July, which did help for several weeks, but the pain came back. It seemed to come and go, depending on how much Doug was on his feet.
His regular doc prescribed physical therapy, which did not help. Finally in early October she ordered plain x-rays of the low back, hip and pelvis - results were negative.
The pain not only continues but is worse. Doug is taking oxycodone 7 mg. If he sits or lies down for a time, the pain goes away, but resumes if he is on his feet.
This last Monday, the doc ordered a CT scan. Now, finally, we got an indication of what might be causing the pain. The scan shows "multiple irregular areas of demineralization." Basically thinning bone. There are several areas of lesions on the hip and proximal femur ranging in size from 1.5 cm to 3.8 cm. The usual contrast could not be given due to Doug's 'abnormal kidney function' (it has been stable for quite a while).
Tomorrow we have an appointment for a consult with an orthopod in a neighboring town.
Now the hip pain. Since last June or before, Doug has had intermittant left hip pain. He tried a series of chiropractic treatments which did not help. He tried a series of four accupuncture treatments in July, which did help for several weeks, but the pain came back. It seemed to come and go, depending on how much Doug was on his feet.
His regular doc prescribed physical therapy, which did not help. Finally in early October she ordered plain x-rays of the low back, hip and pelvis - results were negative.
The pain not only continues but is worse. Doug is taking oxycodone 7 mg. If he sits or lies down for a time, the pain goes away, but resumes if he is on his feet.
This last Monday, the doc ordered a CT scan. Now, finally, we got an indication of what might be causing the pain. The scan shows "multiple irregular areas of demineralization." Basically thinning bone. There are several areas of lesions on the hip and proximal femur ranging in size from 1.5 cm to 3.8 cm. The usual contrast could not be given due to Doug's 'abnormal kidney function' (it has been stable for quite a while).
Tomorrow we have an appointment for a consult with an orthopod in a neighboring town.
Saturday, July 16, 2011
Busy summer
We have had two sets of people come visit us in Buena Vista this month. The first couple is from Texas - they are full time RVers who have their 'home base' at the same RV park where we have our lot. Margie and Edmund had never been to BV before and we enjoyed showing them around.
The second group are our long time friends from Omaha, the Stephan family: Gary and Jan, their daughters Lindsay and Brianne, and Brianne's husband Tavis. This is their third time here - they really enjoy Buena Vista. They all stayed at a local B&B; they rented a cabin right on the Arkansas river. In addition to sampling our good restaurants and all the gift shops, this time we did something new. We took a train ride from Leadville up into the mountains. Here is a photo of Doug and me on the train. I never did get a photo of all the Stephans together.
Doug's hip/back pain is still there but a bit improved. I wonder if the accupuncture is what helped. He hurts when walking too long. But he has been doing a lot of things around the house and yard, including painting some of the outside house trim.
Life is good. Praise God.
Love to all.
The second group are our long time friends from Omaha, the Stephan family: Gary and Jan, their daughters Lindsay and Brianne, and Brianne's husband Tavis. This is their third time here - they really enjoy Buena Vista. They all stayed at a local B&B; they rented a cabin right on the Arkansas river. In addition to sampling our good restaurants and all the gift shops, this time we did something new. We took a train ride from Leadville up into the mountains. Here is a photo of Doug and me on the train. I never did get a photo of all the Stephans together.
Doug's hip/back pain is still there but a bit improved. I wonder if the accupuncture is what helped. He hurts when walking too long. But he has been doing a lot of things around the house and yard, including painting some of the outside house trim.
Life is good. Praise God.
Love to all.
Tuesday, June 28, 2011
Summer is here
We have had a very good spring, and now summer in Buena Vista. Although we have had no rain for months, we are enjoying our usual delightful dry mountain weather. Hot sunny days and cool nights, no humidity and very few bugs. The Arkansas river is running fast and full, and so is Cottonwood Creek which runs through town.
The second week in June, we drove up to Cottonwood Pass to see the snow. The county had just finished plowing the road for the big "Ride the Rockies" bike event. You can see just how tall the plowed drift was.
The next photo shows Doug standing in front of the yellow climbing rose in our yard. This looks more like summer!
Our days have been busy with routine things like lots of yard work. Doug has been bothered with low back and hip pain, but that is not from his cancer - "just" sciatica. He tried the chiropractor without success and is now getting accupuncture.
Both Doug and I volunteered to help with our church's Vacation Bible School this year. That was a lot of work and called for lots of patience with the kids, ages 5 to 10. We had to pray for more energy for the adults and less energy for the kids! We ended up feeling blessed at the end of the week.
God has been very good to us, and we continue to live busy active lives. The myeloma is ever present in the background; we are happy to leave it there.
Life is very good, praise God.
The second week in June, we drove up to Cottonwood Pass to see the snow. The county had just finished plowing the road for the big "Ride the Rockies" bike event. You can see just how tall the plowed drift was.
The next photo shows Doug standing in front of the yellow climbing rose in our yard. This looks more like summer!
Our days have been busy with routine things like lots of yard work. Doug has been bothered with low back and hip pain, but that is not from his cancer - "just" sciatica. He tried the chiropractor without success and is now getting accupuncture.
Both Doug and I volunteered to help with our church's Vacation Bible School this year. That was a lot of work and called for lots of patience with the kids, ages 5 to 10. We had to pray for more energy for the adults and less energy for the kids! We ended up feeling blessed at the end of the week.
God has been very good to us, and we continue to live busy active lives. The myeloma is ever present in the background; we are happy to leave it there.
Life is very good, praise God.
Sunday, May 1, 2011
Smooth road
Our road on this myeloma journey continues to be smooth. Doug's latest results from the myeloma blood panel shows no sign of the M protein. All blood work is stable. He will continue to be checked every three months. We are so blessed.
Doug had his cardiology check up in April. An EKG was done and shows no problems. He only has to see the cardiologist once a year now. It is amazing to me that his heart is so well now, when two years ago he was on life support because of the virus in his heart.
Doug also went to the opthalmologist office for an optic nerve test. The Dr. calls the test results "worrysome". Evidently the optic nerve shows more damage from the glaucoma. (It can't be proven, but I am suspicious that the chemo caused the glaucoma.) The eye pressure is down, so that part is good. I put the eye drops in Doug's eyes every night, so I am sure he is taking them faithfully.
We are living a high quality life and are so thankful for this time. God is so good! We are looking forward to our oldest grandson's high school graduation in Denver later this month.
It snowed here in Buena Vista last night. We need the moisture, but a nice warm spring rain would be most welcome. However I sure can't complain about anything!
Love to all of you.
Doug had his cardiology check up in April. An EKG was done and shows no problems. He only has to see the cardiologist once a year now. It is amazing to me that his heart is so well now, when two years ago he was on life support because of the virus in his heart.
Doug also went to the opthalmologist office for an optic nerve test. The Dr. calls the test results "worrysome". Evidently the optic nerve shows more damage from the glaucoma. (It can't be proven, but I am suspicious that the chemo caused the glaucoma.) The eye pressure is down, so that part is good. I put the eye drops in Doug's eyes every night, so I am sure he is taking them faithfully.
We are living a high quality life and are so thankful for this time. God is so good! We are looking forward to our oldest grandson's high school graduation in Denver later this month.
It snowed here in Buena Vista last night. We need the moisture, but a nice warm spring rain would be most welcome. However I sure can't complain about anything!
Love to all of you.
Saturday, March 19, 2011
Two Year Anniversary of Transplant
Two years ago today was the stem cell transplant. Little did we know the rocky road that was ahead. But by the grace of God we got through it, and today Doug is well and thriving. His quality of life is excellent and our faith is strong.
We leave the warm weather of Texas next week for our mountain home in Colorado. We have made some good friends during our winter stay but we will be glad to get home. Doug already has an appointment with his oncologist.
We leave the warm weather of Texas next week for our mountain home in Colorado. We have made some good friends during our winter stay but we will be glad to get home. Doug already has an appointment with his oncologist.
I think this photo reflects the man of peace that Doug is.
God allows us to experience the low points of life in order to teach us lessons that we could learn in no other way. C.S. Lewis
Friday, January 28, 2011
Wintering in Texas
We are spending this winter in our RV, which is semi-permanently parked near Hondo TX, an hour west of San Antonio. Our RV park is a membership Co-Op, so everything gets done by volunteers. We have been very active; Doug is on the Kitchen committee and I am on the Membership committee. The park has a large clubhouse, and "social hour" three days a week. The main fund raising activity is dinners at the clubhouse. Doug and I are going to put on a baked potato supper with the help of other volunteers.
The weather here has been chilly at night but most days are pleasant. Usually it starts to warm up by February, and gets downright hot in March! We are enjoying our stay but will be glad to get home to Colorado in April.
Doug has a general practice physician here, and gets his blood work done at the local clinic. The results are sent to his oncologist back home. So far everything looks good.
We do have some sad news -- a man who just passed away from his MM. Mark lived on the east coast, so we never did meet him, but his wife kept a blog, much like this one. Mark was diagnosed in 2006 and had a stem cell transplant in late December 2008, just three months before Doug had his. After a remission, Mark relapsed in May 2010 and fought a hard battle with many complications. We are praying for his family.
We are constantly aware of the fragility of life, and so very thankful to God for Doug's health. We do not worry, but rather try to enjoy every day and trust the Lord to take care of us.
Love to all.
The weather here has been chilly at night but most days are pleasant. Usually it starts to warm up by February, and gets downright hot in March! We are enjoying our stay but will be glad to get home to Colorado in April.
Doug has a general practice physician here, and gets his blood work done at the local clinic. The results are sent to his oncologist back home. So far everything looks good.
We do have some sad news -- a man who just passed away from his MM. Mark lived on the east coast, so we never did meet him, but his wife kept a blog, much like this one. Mark was diagnosed in 2006 and had a stem cell transplant in late December 2008, just three months before Doug had his. After a remission, Mark relapsed in May 2010 and fought a hard battle with many complications. We are praying for his family.
We are constantly aware of the fragility of life, and so very thankful to God for Doug's health. We do not worry, but rather try to enjoy every day and trust the Lord to take care of us.
Love to all.
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