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.

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

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.

Knee Surgery

Doug's right knee has been bothering him and lately got a lot worse. He wasn't able to walk far or bike ride. The good news is that it has nothing to do with cancer! Last Wed he had arthroscopic surgery -- the orthopod said he found a "nasty" cartilage tear and cleaned it up.

Of course, Doug had to have a pre-op exam before the surgery. The basic exam showed no problems, but with Doug's history he also had to get clearance from his cardiologist. He had just seen the cardiologist in early October, with an EKG and an echocardiogram that were both "normal". But the cardiologist would not release Doug for surgery until he had a stress test. Since he could not do the treadmill with a bad knee,  off we went to Colorado Springs for a chemical stress test. That took four hours - most of it waiting between baseline scan, injection, more waiting for the isotope to clear the liver and get to the heart, scan, another injection, wait and a post scan. He didn't experience any of the anxiety, sweating, etc that was mentioned. Doug said all he noticed was a kind of rapid heartbeat but not bad.

Doug is hobbling around pretty well and off the pain meds. Next Tues we return to the orthopedist office so they can clear him for some physical therapy. We hope to still leave for Texas the day after Thanksgiving, but if that gets delayed it will be okay too.

We feel very fortunate to be dealing with a routine medical problem for a change. Life is indeed good!

As Thanksgiving approaches, we hope each of you has a joyous heart and a thankful spirit, and may God watch over you.

Remission holding!

Doug had his visit today with the oncologist in Salida, Dr. Myers. All the bloodwork from the myeloma panel looks good. Still no sign of the cancer!  Praise God! Twenty months since the transplant and holding.

He also had an echocardiogram (ultrasound of heart) today that was ordered by the cardiologist. Just routine since there have been no problems.

This was a beautiful day in Buena Vista, weather and otherwise!

Love to all.

All is well - off all drugs

I am very happy to report that all is well here. Doug has finished his two years of Zometa, the biophosphanate drug that strengthens bones. No more trips for infusions! So other than daily vitamins he is now off all drugs. Of course I am holding my breath that his bones stay strong.

We have had a wonderful summer and now fall is here. Maybe not officially according to the calendar, but fall weather is here. We are having delightfully warm days and chilly nights. The flower garden is still pretty but I have cut back my hollyhocks. We measured the tallest one and it was 9 feet.

My sister came from Murfreesboro to visit a couple of weeks ago, and we went to Denver to see our son Kelly and his family. All five grandkids were there and we had a great time. The grandkids are all teenagers now, ages 14 to 18. I am posting a picture of Kelly and his family.

We are very thankful that our lives are this good. We both have been doing volunteer work at our church. It feels good to be on the giving end.

Love to all.

Cold Agglutination

Doug had his appointment with Dr. Myers in Salida today. His blood work shows no sign of MM - praise God!

Dr. Myers said that Doug has tested positive for "cold agglutinate". This is a rare disorder where abnormal blood proteins called cold agglutinins cause red blood cells to form clumps and die, thus causing possibly severe anemia. The process is triggered by exposure to cold temperatures. Dr. Myers said that Doug needs to avoid getting chilled, so he should dress warmly in cold weather. Or spend the winters in Texas, which we had already planned to do!

Of course we had never heard of this before, so I looked it up for more detail:
Cold agglutinin disease is an autoimmune disease characterized by the presence of high concentrations of circulating antibodies, usually IgM, directed against red blood cells. It is a form of autoimmune hemolytic anemia, specifically one in which antibodies only bind red blood cells at low body temperatures, typically 28-31°C. (82 – 88 degrees F)



There are two forms of cold agglutinin disease: 1-primary and 2-secondary. (Doug's is secondary to the MM.)


• The primary form is by definition idiopathic, a disease for which no cause is known.


• Secondary cold agglutinin disease is a result of an underlying condition.


 In adults, this is typically due to a lymphoproliferative disease such as lymphoma and chronic lymphoid leukemia, or infection.


At body temperatures of 28-31°C, such as those encountered during winter months, and occasionally at body temperatures of 37°C (normal body temp, 98.6 degrees F), antibodies (generally IgM) bind to the polysaccharide region of glycoproteins on the surface of red blood cells (typically the I antigen, i antigen, and Pr antigens). Binding of antibodies to red blood cells activates the classical pathway of the complement system. If the complement response is sufficient, red blood cells are damaged by the membrane attack complex, an effector of the complement cascade. In the formation of the membrane attack complex, several complement proteins are inserted into the red blood cell membrane, forming pores that lead to membrane instability and intravascular hemolysis (destruction of the red blood cell within the blood vessels).


Individuals with cold agglutinin disease present with signs and symptoms of hemolytic anemia.

Dr. Myers said that this disease does not usually result in any significant clinical impact, so we are not too alarmed at this point. Right now the blood tests show mild anemia but that is not new. Doug's cold agglutinin test showed a dilution of 1:64. Normal is 1:32.

So just one more thing to watch -- meanwhile we continue to lead happy busy lives.

Love to all.

Catching up

Wow, time really does fly. I was reminded that I have not been updating the blog when someone emailed to ask if Doug was okay. Yes, he is! Sorry for the lack of information; I will try to do better.

We went to Denver to RMCC April 13 for Doug's one year checkup with Jeff Matous M.D. Jeff (yes he is very okay with being called by his first name) is an amazing guy. He is always enthusiastic, very well informed and upbeat, ready to answer any questions. All doctors should all be like this, right? Unfortunately they aren't as you all probably know. Jeff told us he was leaving soon for Italy where he would take part in a big bike race.

Doug had had blood taken for various tests the week before, so Dr. Jeff had the results. The titers showed that Doug still has immunity on most diseases, so he doesn't need any re-vaccinations except the yearly flu. I was pleasantly surprised on that. His CBC and Chem was good.

 Bone density shows osteopenia (precursor to osteoporosis). He is still on monthly Zometa, the biophosphonate bone strengthener -- August will be the last infusion of Zometa. Studies show that the efficacy drops sharply after two years, and the risk of necrosis of the jaw (with dental work) means stopping is the best thing. Stopping Zometa will be good for Doug's kidneys too. Right now we are told his kidney function is "adequate". I hope his bone strength holds.

Doug's blood shows no sign of MM -- whew. Jeff told us that new studies show improved disease-free survival after SCT if the patient is put on maintenance therapy immediately after SCT. At the time of Doug's SCT that information was not out yet, so Doug is not on any drugs except the Zometa. Jeff said he does not want to start maintenance chemo now. He did tell us about two new drugs that will be available if/when Doug relapses. Pomatidromide is "the new Revlimid" and Carfilzomib is "the new Velcade" and does not result in the dreaded neuropathy.

So for now Doug continues seeing Dr. Adam Myers in nearby Salida every three months for the "MM panel" blood work.

We have been enjoying our wonderful summer weather here in Buena Vista. When the day is sunny it feels hot (with very low humidity so not 'sticky') but if you go in the shade it feels quite nice. Evidently bugs do not like our high altitude; we have a few flies but almost no mosquitoes. It is very pleasant to sit outside in the evening - we haven't even used bug spray. Most nights we sleep under a light blanket.

I'm posting a photo of us taken a couple of weeks ago. The yellow climbing rose is in our back yard; the green house is our neighbor's. Life is good -- we hope all of you are good also.