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.

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.

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.

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.

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.

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.

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.