2012 Review

Wow - another year ends. Time really does pass quickly. We had a few medical adventures in 2012 but all in all, it was a good year.

Here are the highlights:

• Doug achieved a second remission
• We sold our 5th wheel in Texas
• Doug's endoscopic ultrasound was negative for pancreatic problems
• Doug went on maintenance chemo
• We moved to a new house
• Our buyers for the old house broke their contract (we still are trying to sell it.)
• Doug had radiation therapy twice for hip pain
• Hip pain finally resolved
• Doug had a heart stent put in
• We sold our Texas RV lot
• White blood counts wavered a lot - seem to be finally stabilizing at a 'new normal'
• He caught a cold and recovered from it - yeah, a working immune system!
• Doug had successful eye surgery for glaucoma
• We sold our truck camper

We had a wonderful Christmas in Denver with lots of extended family. All five grandchildren were home - a precious time as they grow older. The oldest grandson has already flown the nest - he is in the Air Force and studying Farsi at the Defense Language Institute in Monterrey CA. The next oldest is in his first year of college. The youngest three are still in high school.
We enjoyed great food; our daughter in law is a terrific cook. Then most of us gathered to play a fun game called "Bubble Talk". It was a really good time - we were so glad to be there.

We are staying home tonight on New Years Eve. We'll have a nice relaxing time and doubt we will stay up until midnight!

HAPPY NEW YEAR to all, and Peace for the coming year!

"Fulfillment cannot be attained by seeking and grasping, but by surrendering and breathing right now, in the present."       Karen M. Wyatt, M.D. from WHAT REALLY MATTERS

ANC up a bit

Doug has an upper respiratory infection with bad cough. It came on over the weekend. Thankfully, he got a spot on the clinic schedule yesterday. Our favorite nurse practitioner  started him on antibiotics and a strong cough syrup. He does not have a fever and his lungs are clear. Could be a lot worse.

We went today for Doug's CBC. Results are good - his ANC is up to 1.7 (last time was 1.4). Looks like his body is mounting a response to the cold. Very encouraging. And his next blood draw will be in four weeks instead of two - yea!

Our weather has been very cold with some high winds, so we have mostly been homebodies lately. We have not got much snow at all - just enough to broom off the walks. If we do get snow, I doubt anyone will complain - we sure need the moisture.

Love to all.

Doing Okay

Doug had a blood draw today and then an appointment with the local oncologist. His ANC is 1.4; low but still within the tolerance set by the Denver specialist. Doug is feeling good and has even gained weight.

The phlebotomist has been having trouble finding a vein to draw from lately. If Doug was having frequent infusions, it might make sense to have a port implanted. But the maintenance Revlimid is a pill, and the Zometa infusion is at three month intervals. Currently the blood draws will be done every two weeks.
So since a port would have a possible side effect of a clot forming, it doesn't seem like a good idea right now. The oncologist recommended that Doug lift free weights! We had not thought of that, but it makes sense - that would increase the blood flow in the arms and might create a demand for more (better?) veins. Anyway, it can't hurt. I have 5 lb. weights he can use for now. Exercise is good.

We had a quiet Thanksgiving but it was enjoyable. We usually go to an extended family get-together for Thanksgiving. Lots of people, lots of great food. This year we decided to stay home and avoid kid germs. Doug and I got outside for a walk in nature. Earlier in the week we had a wonderful pre-holiday turkey dinner with friends.

The flu season is here. We know several people who have come down with flu. We are being careful but still going out. Germ-x is our friend; we carry a small bottle with us always.

God is good.

Love to all.

Stopping Revlimid - Not

Doug's white count continues to rise marginally, then drop. On 11-14 the ANC was 1.5; the local oncologist was not comfortable with this. He said to us: "I think you should stop the Revlimid. Your marrow cannot tolerate it any longer." He did not have any other chemo to offer - he said he didn't know of any that would not be toxic to the marrow.

Keep in mind that Doug is clinically doing great. No pain, eating well, sleeping okay, able to go places and enjoy activities. Stopping treatment and waiting for a relapse just did not sit well with us.  So we emailed our consulting Myeloma specialist in Denver who did Doug's transplant. If it weren't for the 2.5 hour drive to Denver over mountain roads we would be seeing him regularly instead of the local oncologist. Why the local oncologist didn't consult with him this time is a puzzle to me.

I have said before how accessible the Denver specialist is. He's nationally recognized, gives talks at Myeloma conferences, is a brilliant busy guy who is enthusiastic about his work. Given all that, it always amazes us how he responds quickly when we call or email him. He said "Take 5 mg. Rev every other day so long as the ANC is above 1.0."  He is less conservative than the local oncologist who felt the ANC had to be above 2. That is conventional wisdom but this is not the time to be so conservative.

We feel much better to keep on the maintenance treatment. For now we can breathe a little easier. Stopping the Rev would seem like giving up.

We are going to be really careful to stay away from anyone who might have the flu or even a cold, as the neutrophils (infection fighting cells) go lower. But right now life is good. Praise God.

Home from Nebraska, resuming Revlimid

After a week off the Revlimid, Doug's ANC came up to 1.9. So he is back on 5 mg. Rev daily, and will have another CBC this week.

We are glad to be home, but we did have a good trip to Neb. Doug's mother is doing as well as can be expected for age 99. Her biggest physical problem is loss of vision. She has some peripheral vision, so she gets around her apartment pretty well. She is not a fall risk; she walks without a cane.  When she goes out in the halls or outside she does hold on to whoever is with her. She has two wonderful ladies from Home Instead who come daily to make sure she eats lunch and take her meds, and do any errands. If she is having a bad day they come again in the evening. She really values her independence - she has consistently refused to come to Colorado. Quite a lady.

Doug did well on the trip. He did get a little tired but still wanted to do the bulk of the driving. I am so thankful for no infections with the low white count. We are enjoying life and each other. Praise God.

On Break from Rev

Today's CBC showed Doug's absolute neutrophil count is up a little: 1.4 - better than last week's 1.2 (or 1200, depending on what units the lab uses). While this is a slight improvement, the oncologist wants Doug to stop the Revlimid for one week, and repeat the blood test then. I really don't like this on again, off again stuff. But we will comply.

We will still leave for Nebraska this Friday; we can have the blood test done there. I am so thankful that Doug feels good.

Love to all.

ANC falling

Doug had his blood draw yesterday. His ANC fell from two weeks ago. It was 2.1; now is 1.2 (or 1,200). The oncologist is changing Doug from 5 mg. Revlimid every day to 5 mg. every other day. He will get a CBC every week for a while. I think this is a good strategy. We want to keep him on Revlimid - it has been a good drug for Doug. He can tolerate it with minimal side effects (except for the white count), and it is keeping him in remission.

Although the ANC is low, it is not yet dangerously low, as far as susceptibility to infections. Anything below 500 is considered neutropenic, and precautions would need to be taken. We want to avoid that.

Meanwhile Doug feels good. Our lifestyle has not been altered; we are having friends over for dinner Saturday.

Love to all.

^“The faithful love of the LORD never ends!
His mercies never cease.
 Great is his faithfulness;
his mercies begin afresh each morning.”   Lamentations 3:22-23 

From Wikipedia, the free encyclopedia:

Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes^[1] (also known as polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection.

The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called "segs," or segmented cells) and bands, which are immature neutrophils.

A normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection. Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer.

Doing well, Walking trails

Doug had his medical oncology appointment Wed. Everything looks good. He will continue to have a CBC every two weeks to check the white count, but so far the ANC is holding at 2.1. Good enough. Zometa will continue every three months. Revlimid 5 mg. continues daily. He doesn't have to see the oncologist until January, unless something happens.

My sister is gone back to TN. While she was here she took a photo of Doug and me that turned out   pretty good, so here it is. Doesn't he look great?

We went on a hike (more walk actually) today - we walked along a short part of the Colorado Trail. It was a beautiful day to be outside in nature. We truly appreciate Doug being able to walk without pain. Praise the Lord!
The trail goes alongside Cottonwood Creek - here is a photo we took from the trail. This was only a 15 minute drive from our house. We are so blessed to live in this gorgeous part of the country.

We haven't gone to Nebraska yet; Doug did not have permission to do any highway driving while his eye was healing from the surgery. Turns out he had developed a 'leak' in the eye and fluid was draining out a lot faster than it was supposed to! Now it is healing well and we will make the trip first part of Nov.

Love to all.

White counts up - resuming maintenance chemo

I'm behind on updating the blog. My sister is here on a visit from Tennessee, so we have been busy doing fun things.

Doug's latest blood test brought good news. His ANC is 2.1 and his white count is 3.3. Still a bit low, but good enough to resume the Revlimid. Yeah! We don't have the 5 mg. Revlimid yet, so for now Doug is taking 10 mg. every other day. Next week we should have the 5 mg. capsules.

Doug's eye is healing slowly, but it is healing. The glaucoma had raised his eye pressure to 23; a week after the surgery, the pressure was 1. That's too low. The surgeon said it should normalize to about 10 soon.

And the MM bloodwork shows he is still in remission! He is feeling pretty good. Saturday we leave for a trip back to Nebraska to check on Doug's mom, who is 99.

We have much to be thankful for.

Love to all.

Still on chemo hold, eye surgery

Doug had a blood draw yesterday - his ANC is still 1.7, and his WBC is 2.9, lower than last week. So the oncologist doesn't want to resume the Revlimid yet. If next week's lab report isn't high enough to resume Rev, we will probably seek another opinion. Meanwhile Doug feels good and has had no infections.

Doug had cataract surgery, and a mini-shunt procedure for glaucoma in his right eye today. His cataract was affecting his vision, and the opthalmologist said it would be a good time to also take care of the glaucoma in that eye. (Left eye also has glaucoma and Doug will continue two kinds of drops in that eye.) He came through the surgery fine, and we go back to the Dr. for a follow up tomorrow. Anyone remember the old days when cataract surgery was a big deal, with sandbags on either side of the head, and days of bed rest? We are so fortunate that eye surgery has progressed so much!

Counts still low; still on chemo hold

Doug is still on hold from his Revlimid because of low blood counts. His counts are better but not good enough. The oncologist wants his ANC (absolute neutrophil count) to be 2 before starting back, and it is 1.7. I'm not worried about the low counts; I know they will come up. He's been on hold now for 14 days, the longest time ever since he relapsed. He gets another blood test tomorrow. Since the Revlimid is what is keeping Doug in remission, I'm antsy for him to start back on it.

His left hand is much better now, but still a bit tender. We saw the orthopod's P.A. today. She says arthritis of the CMC (carpal/metacarpal joint) usually waxes and wanes. Sometimes just resting the joint by using the brace and taking ibuprofen is all that's needed. If it keeps recurring, a steroid injection into the joint might be necessary; the ortho doc can do that. Worse case scenario would be hand surgery, and that would require a physician who specializes in that. Since it is much better, we don't plan on doing anything. Arthritis can be really painful but it's not high on our worry list now.

Doug is continuing to walk without pain; we are so grateful to God. We have planned a trip back to Nebraska in early October to visit Doug's mom.

"The faithful love of the Lord never ends! His mercies never cease. Great is His faithfulness; His mercies begin afresh each morning."  Lamentations 3:22-23 

Arthritis of left hand

Yesterday we drove to Denver, to keep an appointment with Dr. Jeff Matous, our 'super-specialist' in Myeloma. Dr. Matous was in charge of Doug's stem cell transplant; we see him about once a year and think very highly of him.
Dr. M thought about Doug's recent history of persistent left hip/low back pain, despite radiation therapy. He said MRI would be helpful to see any new bone lesions. Since Doug can't have an MRI due to his pacemaker, Dr. M. said a CT/PET scan would be the thing to do. A regular CT scan can't tell the difference between old bone lesions and active 'hot' lesions, but CT/PET would. So if/when that pain comes back, we have a plan. Dr. Matous is thinking that perhaps Doug's pain could have nothing to do with the myeloma. He also said Doug should change Revlimid maintenance dose from 10 mg. down to 5 mg. This is because the white blood counts are going too low. But he is still in remission.

A new problem - day before yesterday Doug's left proximal thumb started to hurt. Yesterday morning it was a bit swollen and still hurting. By the time we were waiting for Dr. Matous to come into the exam room, the hand/thumb was very swollen and exquisitely tender. Dr. M checked it out, didn't think it was infected, and called his orthopedic buddy. We ended up going first to a vascular doctor's office for an ultrasound, to rule out a clot or abscess, then over to the orthopedist's office. The ortho doc said this was an unusual presentation - such quick pain without trauma. He took an X-ray which showed arthritis of the proximal thumb joint! That was a surprise. The doc put a splint on Doug's hand and recommended ibuprofen to reduce inflammation. He said steroid injections might be necessary in the future.

There is a medical saying: "If you hear hoofbeats, think horses, not zebras." With Doug's history, the first thing is to think of myeloma causing bone pain. But other things like arthritis can also be the culprits.

Doug feels better today, after a night's rest. We didn't get home until 9 p.m. last night - 8 hours in Denver, three physicians offices instead of one, and four hours travel time. We are very glad that Dr. Matous arranged all that to happen in one afternoon. Doug is really in good hands. And yes, he managed to drive both ways despite his pain. That's my guy.

Love to all.

Hip Pain went away!

Aug 31, Doug started having severe pain in the right hip/lower back. Remember, all the pain so far has been in the left side. It was so bad he actually took a Percoset (he hates to take pain meds), and used a cane all weekend. Monday the pain started to subside, and by Tuesday he was almost pain free, both left and right sides. For the first time in months!

Last Tuesday was also the consult with the orthopedic doc. Since Doug was not hurting, he didn't want to do anything right now. He did say something we had not heard from any other physician: pain in the 'back side' of the hip area is always caused by a problem in the lumbar spine; a true hip problem would cause pain in the front, or groin area. Doug's lumbar spine was never radiated, just the hip and proximal femur, but he did show lesions in that area.

Yesterday Doug walked around the block with me. He hasn't been able to do that in a long time, and it was such a pleasure. Now he is busy doing home repairs. Cancer sure makes us appreciate the small things we used to take for granted.

We are giving thanks to God for this lovely lull in 'the action'. God has seen us through crisis after crisis, and we have learned to lean on him, no matter what happens.

Love to all.

"I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit."           Romans 15:13  

Things are stable

We are doing okay. Doug's hip pain is about the same. Aug 21 we drove to Colorado Springs for a follow up appt. (after the stent) with the cardiologist. Doug's heart is doing good; keep on the Plavix for a year. He wants Doug to have a lipid panel done in another two months to make sure Doug's liver is tolerating the Lipitor.

Aug 22 was the appt. with the oncologist in Salida. The myeloma blood test shows Doug is still in remission. Since Doug is still having considerable hip pain with weight bearing, the oncologist is referring Doug to a orthopedist, to see if some kind of orthopedic intervention might be wise. The orthopedic appt. is Sept 4.

Doug decided to go ahead and have eye surgery done - cataract and probably for the glaucoma too. That is scheduled for later in Sept. Since he has to sit so much, having good vision for reading is important.

Love to all.

Getting over caregiver slump

Doug is really trying to rest more. He does get pain relief while sitting or laying down, so at least the pain is not constant. But he still hurts a lot when up doing things. We have an appointment in Sept to see the Myeloma specialist in Denver; maybe he will have something to suggest.

I had a root canal done yesterday; had a fractured molar that was really giving me pain. Last night
I slept through the night for the first time in weeks. We had to go to an endodontist in Colorado Springs; Doug drove and did well - he got to sit while driving two hours each way and in the dentist waiting room for 2.5 hours.

We continue to unpack boxes and hang pictures at a snail's pace. That's okay - we keep busy between rest periods.

I am slowly getting over my caregiver slump. Being out of pain helps a lot. Tues at Bible study I got all weepy and had to leave. Today four girlfriends called to see how I am doing, plus a friend from Nebraska emailed. I know I have said it before, but we are blessed to have wonderful friends.

Love to all.

Return of hip pain

Doug told me yesterday that he is still (or again?) having left hip pain - he describes it as level 6 or 7. He's frustrated. I am too, but I reminded him that his activity level has been off the charts, for him, as he is working so hard. We are still cleaning out the old house - our great friends moved the furniture for us, but everything else we are still moving. The biggest hurdle is getting the garage totally cleaned out at the old house. It got to be a messy, unorganized packrat of a garage. We have made huge progress, tossed or donated lots, found spots to store things in the new house. We are trying to do this at a slow pace, but Doug is having trouble slowing down.

I think I finally got him to understand that 'resting' does not mean sitting for five minutes and popping up again.  Yesterday and today he has done much less and is spending more time in the recliner. The hip is still trying to heal; hopefully it will.

We love our new neighborhood, and the two sets of neighbors we have met so far are great. It makes me sad to go over to the old house, not because I am still attached to the house, but because the yard/flowers are starting to show neglect. I still do weeding, mowing, and cutting spent flowers back, but can't spend the time I used to on the yard as when we were living there. It can't be helped. We now have a rock/gravel yard, as do many in our new neighborhood. We do have three evergreen trees, so at least have some green.

I am beginning to feel more rested. Even though he hurts and is frustrated, Doug's attitude is good.

Love to all.

“Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it. “           Michael J. Fox  

Hip Pain Gone - Home tomorrow!

Today was Doug's third radiation treatment (this time around) and already his hip pain is almost totally gone. He stopped taking the Morphine after the first treatment on Monday. Today he saw Dr H, the radiation oncologist. Doug told her how good he is feeling and asked her "Do I really need the five treatments, or can we skip the last one?" She thought about it for a minute and said it would be okay to stop after tomorrow. Since she is giving the radiation strictly for symptom control, it makes sense. She also said if the pain ever comes back in that area, this leaves her a little leeway to treat it yet again if necessary. Yippee!

Doug's weight today was down to 157, but that was with him wearing sweatpants instead of jeans with heavy belt/ flashlight, knife, phone. He has an appetite and is eating, so I'm not going to be concerned about weight right now.

I have been in a bit of caregiver slump lately. Lack of energy, poor sleeping, close to tears a lot. Considering our moving into the new house (I hate moving), the old house buyers backing out at the last minute, needing to keep up the yard at the old house, Doug's pain - all that builds up. I was able to take a nap today and yesterday, so that helps a lot.

I know it says in the Bible "do not worry" over and over again. Now I see why the Bible keeps repeating it: we need to hear it a lot! I am trying to hand everything over to the Lord, but I have to admit it is hard to let go of the worry. I, being human, keep grasping at things I mistakenly think I can control. I/we can do nothing by ourselves. I remember in one sermon this year, the pastor said "When you get to the end of your rope, don't tie a knot and hang on -- let go, and trust God to catch you." I love that visual. I just didn't think it would be this hard to let go.  My life verse is Proverbs 3:5-6:
"Trust the Lord with your whole heart. Do not depend on your own understanding. Seek His will in all you do, and He will direct your steps." 

Love to all.

Morphine not helping, Radiation one more time

The MS Contin (morphine pills) has not worked to control Doug's hip pain. Didn't make him drowsy at all either; he continues to drive as he can do that sitting. I am really glad Doug can do the highway driving - I am so tired I might run us off the road.

The radiation oncology office called at 9:30 this morning. They said Doug could start his treatments if we could get there by 1:00. So we packed in a hurry, asked the new neighbors to water the pots of petunias, and left for Edwards and the Shaw Cancer Center.

This time is a re-treatment of the original left hip field. Last November, when Doug was hurting so bad I pushed him in a wheelchair, the radiation worked within a few days, stopping the pain. That time he got 3,000 cGy (centigrays, the measurement of therapeutic radiation - used to be called 'rads' in the old days). This time he will get 2,000 cGy, for a total of 5,000 to the hip. This is a safe dose - there are no vital organs in the field, and the team has checked the plan well, including the radiation physicist. Radiation given for a curative intent often goes higher in total dose but in smaller daily doses. Radiation is given to Doug for palliation (symptom relief) not to cure.

We are staying again at Jack's Place. People here at Jack's and the radiation team know us pretty well by now. After the tacky motel in Co. Springs, I really appreciate Jack's wonderful rooms.

Doug's white cells did go high enough for him to re-start the maintenance Revlimid. Good. He will get a CBC weekly for a couple of times.

We moved into the new house last Wed. Many hands helped out and we are forever grateful. Since moving in, we have only spent Saturday and Sunday at home. Thursday and Friday were medical appointments out of town. We have been so busy moving boxes and trying to get unpacked. Maybe this week will be our chance to relax a little. Not our dream R&R but we'll take it.

The bed beckons. . .

Love to all.

Heart Stent, Moving, Morphine

Well life is not boring these days. July 17 Doug had a nuclear medicine cardiac stress test. (This was because he had been having very occasional tightness in his chest - no pain.)  July 18 the cardiologist called us to say the test showed a blockage, and we were told to show up the next day to talk to him; and that we might want to prepare to stay overnight. So the next day, after spending the morning at the Salida hospital for Doug's Zometa infusion, off we went to Colorado Springs with the duffle bag packed.
Dr. Malone showed us the stress test pictures, said the stress test results could be a mistake, but he didn't think so. He said it would be necessary to do an angiogram, and very likely put in a stent. Because of Doug's compromised kidney function, he decided to admit Doug to the hospital right away to start IV fluids, and he planned to use a contrast that would be safer for kidneys. He also put Doug on an oral drug called "muco-mist" that can help protect the kidneys (it has other uses also). He said he was "picking the best bad choice".

July 20th Doug had the angiogram which showed a 100% blockage of the 'left anterior descending' coronary artery. Dr Malone inflated the vessel with a balloon, put in a stent to keep it open, and the artery immediately filled with blood. The before and after pictures are pretty dramatic. Malone said it went easier than he thought; I told him that's because he had an angel on his shoulder. He kept Doug in the hospital for another night just to make sure everything was okay. Blood work showed his kidney function was better than before! Creatinine had been 1.4 but lowered to 1.0 after the procedure. The team did an excellent job. This was at Penrose Hospital. They do have a nice outpatient temporary residence, but it was full, so I stayed two nights at a rather tacky run-down hotel. A small price to pay for such a successful procedure. Doug is now on Plavix to avoid a clot and will stay on it for at least a year. I think he has more color in his face now. Praise God for that fix.

Meanwhile, the Oxycontin did nothing for Doug's hip pain, even after the oncologist doubled the dose. So today Doug was switched to a 30 mg. morphine pill every 12 hours. The pharmacist said Doug's driving would be up to our judgment; often when a patient has been on a lot of pain meds, morphine does not make them drowsy.

Tomorrow is moving day! Our wonderful volunteers are all lined up. Doug and I have steadily been taking boxes to the new house. We did have some bad news -- the buyers for our little house backed out at the last minute. Very disappointing. Now the house is back on the market and I have to still do the yard work. I usually enjoy gardening, but I'm ready for a rest.

Day after tomorrow we go to Edwards, to the Shaw Cancer Center, so Doug can be all 'mapped out' for a third round of radiation. We pray this will stop the hip pain so Doug can get off the morphine. The radiation treatments should start next Monday. This Friday we go back to Colorado Springs - I am being referred to a special dentist to check out a painful tooth. He will do some kind of special CT scan to try to see if there is a fracture in a tooth. I think that will be painful to the wallet.

What we both need is a week of rest and relaxation. Not going to happen for now, but we are very thankful for good medical care, great friends, and most importantly, God's faithfulness. Doug looks good "on the outside" and he never complains.

Love to all.

House work, low neutrophils, more radiation

Lots to report. July 11th Doug had his oncology appt. His shoulder pain is subsiding; x-rays were negative and we are now thinking it was from him turning the hand crank to raise the cargo trailer. So no action needed there. His MM blood panel shows the myeloma is still controlled - good news there. His neutrophil count is down to 1.2, so the Revlimid is on hold for two weeks. Neutrophils are an infection fighting component of the white cells. He will have a repeat CBC in two weeks to recheck the neutrophils.

Doug's left hip pain persists - he says at times with weight bearing the pain level gets to 8 or 9. (See  radiation oncology report below.) The oncologist started Doug on long-acting Oxycontin 15 mg every 12 hours with 800 mg ibuprofen for breakthrough pain. He had a bad reaction to Oxycontin last November but that was 20 mg; so far he has just slight stomach upset this time.

Upon consulting with our "super myeloma specialist" in Denver, the oncologist says Doug can start increasing the Zometa infusion intervals to three months instead of every six weeks.

On July 12th, Doug had his follow up appt. with the radiation oncologist. She was disappointed to hear that the radiation on his left sacrum did not halt the pain. Even though that turned out not to be the spot causing the pain, the sacrum did show lesions on the CT, so the treatment was not a 'wash'. We'll just think of it as preventative, as a problem would have turned up there eventually. The radiation oncologist now has come to the conclusion that we need to re-treat the original left hip field. We agree with that. She will shrink the treated area slightly to insure that the bladder, bowel and rectum are not in the radiation field. Doug has decided to postpone the radiation for a couple of weeks. We are swamped with so much going on with the selling and buying of the new and old house.

Our son Kelly and grandson Brendan (age 16) came from Denver Tues and today to help paint and hang light fixtures in the new house. They were both a huge help; Brendan is such a good kid and a good worker. Both Doug and I have been painting, etc. Doug has probably been doing too much but I can't get him to stop. We are both exhausted and so thankful for offers from friends to help. I think I will take them up on their offers. One good friend, Jim, sprayed the gravel landscape today to kill the big weeds that were threatening to take control of the yard.

I am posting a photo of Doug, Kelly and Brendan. I apologize for the poor quality of the photo. I think the light from the ceiling fan caused the blur. Didn't think to turn it off.

"No one enters into the real joy of the Lord in spite of the hard times —- but squarely through the door of the hard times."     Ann Voskamp 


Love to all. 

New Pain Rt Shoulder

Doug woke up this morning with a fairly severe pain in his right shoulder. We know, from the bone survey, that he has a lesion in the right humerus. He toughed it out all day - we are in the process of moving to a new home. We are hiring a moving company, and painters, but there is still a lot to do, and I think he overdid. Darn stubborn Hungarian!

He has an appointment with the Oncologist this Wed, and an appointment with the Radiation Oncologist on Thursday. And his left hip still hurts despite the radiation. I am praying he doesn't fracture the right arm. Tonight he finally consented to stay in his chair and take an Oxycodone.

Tomorrow our son and our youngest grandson are coming to help carry boxes and do whatever else they can. Please pray for pain relief and no fractures, and for Doug to take it easy.

"I know the Lord is always with me. I will not be shaken, for He is right beside me."    Psalm 16:8 

Radiation on sacrum finished

Doug finished his radiation treatments Monday; he had a short course of five treatments this time. The treated area was the left sacrum. No pain relief yet, but we are still hoping. The biological effects of the radiation continue for a week or more after treatment is completed, so it could still kick in. At least the pain is not continuous like last November, when he had to take heavy duty narcotics. He gets pain relief when not weight bearing. We have a follow up appointment with the radiation oncologist July 12. If Doug has not had any pain relief by then, we'll go to step 2 - don't know what that is yet!

I did ask Dr. H, the Radiation Oncologist, this question: How can Doug be in remission and still develop new bone pain? She said - since the damage to the bones was already done before he was diagnosed, new pain can develop even though he is technically still in remission. Kind of makes sense, though not terribly reassuring.

We are slowly packing a few things, getting ready for the move. Moving is stressful in itself. Especially in today's economic climate, and we are praying for a successful closing with our buyers. I have had to really work to stay calm lately. Doug seems much better at that than I am sometimes.

Love to all.

"Fix attention on the task at hand, not on its potential consequences."   Robert Brody

Radiation Therapy again

Today we had the consult with Dr. H., the Radiation Oncologist at Shaw Cancer Center. She could see a couple areas that she thinks are causing the pain in Doug's left hip.  When Doug's hip was radiated last November, he got excellent pain relief then, so we expect good results this time too. We really like Dr. H and her excellent staff - it was good to see them but we'd rather see them some other place. Doug starts radiation this Wed, and it will be a short course. Since there will be no sensitive tissues (like bowel) in this field, the radiation can be given in larger daily doses. Could be as few as five treatments, but we won't know for sure until Wed.

We are so thankful that Doug has not had any fractures from any of his bone lesions, and this time he has been able to endure the pain without taking any pain meds. Our spirits are high and both of us feel so blessed, especially for God's timing. We have sold our house, and Doug should be pain-free for the moving process into the 'new' lower maintenance house. We have peace of mind.

Love to all.

"You Lord will keep in perfect peace all who trust in You, whose thoughts are fixed on You."   Isaiah 26:4

Another CT on left hip

Doug still has pain in the left hip, so he called the oncologist, who ordered a CT scan of the hip and femur. Plain X-rays don't show the lesions very well. The CT was done without contrast due to compromised kidney function; if looking at soft tissue, contrast is needed, but bones show up well without it, thankfully.

The radiologist thought that one lesion might be "a millimeter" larger than before, but his reading was inconclusive. So the oncologist has sent both the previous and new scans to the radiation oncologist at the cancer center in Edwards. She is excellent and we have faith that she can read the scans better than the local radiologist. We are waiting for a call from the radiation oncologist, to find out if we have to go for a consult.

Meanwhile Doug is coping well and still doing work around the house in small spurts. The pain is manageable with rest, and he is not taking any pain meds. He enjoyed the river trip with his brother.

Love to all.

Maintenance Therapy

All has been well lately. Doug is eating well, and his weight is where it should be. He finished six courses of 25 mg Revlimid and weekly dexamethasone, and is on his rest week now. On June 5 he starts maintenance therapy, which is 10 mg Revlimid daily and no dex! He won't get any rest breaks from the Rev. The oncologist will do a MM blood panel every two months to see that things are under control. Doug will still be getting a Zometa infusion every six weeks since he has multiple bony lesions.

I am very glad that the heavy duty Revlimid is over; Doug has been so easily fatigued. Hopefully he will have a bit more energy with the lighter dose.

The only problem right now is hip pain. The same hip that had radiation last November. Doug has no pain unless he walks over two blocks or is on his feet a lot. Once he sits for a while, the pain goes away, so we have been trying to ignore it. It's a bummer that we can't go for walks together. If it gets worse we will have to address it.

We are moving to a 'new' house - one with less upkeep. We'll be less than a mile from where we live now. Once we get settled, we will have almost no yard work. We think it is best that we move while we can - before a new crisis hits. Worrying is not good - planning ahead is good.

Doug and his brother are going on a river float trip on the Arkansas this Friday. His brother Jeff will be fly fishing; Doug will be on the boat just enjoying the trip and the scenery.

Love to all.

"Your life is a journey you must travel with a deep consciousness of God."  

1 Peter 1:18 

EUS results - good news

Doug had the endoscopic ultrasound (EUS) done yesterday in Colorado Springs. Results are good - no signs of any mass in the head of the pancreas or in the bile duct. A small portion of dilated bile duct was noted, but not thought to be a problem. Some scarring could be seen in the pancreas, most likely from the severe case of pancreatitis Doug had in 2010. No signs of active pancreatitis. No major abnormality seen! The gastroenterologist said he could not explain Doug's elevated bilirubin level, or the weight loss. He recommended a repeat regular ultrasound in a month, and labwork including a CA 19-9. He did take one biopsy in the stomach, where he saw some gastritis; the biopsy is to check for H. pylori, a bacteria that can cause an ulcer.

The sedation this time was Propofol - yes, the drug that Michael Jackson was taking. They have gone to this instead of using Versed because the recovery time is so much faster. It does require having an anesthesiologist to monitor. We were impressed with the entire team at Penrose.

We also saw the cardiologist last Monday, because of Doug's continuing low blood pressure. He cut the dose of the Coreg in half. He noted that Doug has lost 30 pounds since last year, so now he does not require the higher dose.

The unexplained weight loss is still troubling, but if he can maintain this weight, I will be happy. No more 'Budda belly'!

For now we will just enjoy life in the slow lane.

Blessings to all.

Neck Pain - not cancer

Last Monday morning Doug woke up with neck pain, hurting but tolerable. The next day, Tuesday, he took his Dexamethasone (steroid) - no neck pain. No pain Wed. Thursday (when the Dex wore off), the pain returned with a vengeance. He took a muscle relaxer, which did not do much. Thursday evening he finally took Oxycodone (a fairly potent pain med); that helped some, but it still hurt. More Oxy during the night. I started thinking - what if this is the myeloma acting up? What if this is a pathological fracture? I had these thoughts even though the myeloma numbers look good right now. (Remember back to last fall when everyone thought Doug's hip pain was 'just arthritis'?)

So this morning we called and got in to see our most excellent nurse practitioner. She listened carefully (I love that about her), examined Doug, and said she thought it was 'torticollis' - basically a severe muscle spasm. But she said "since it's Doug, I'm going to order x-rays of his neck to rule out anything going on in the bone."  She showed us the x-rays (I am a retired radiation therapist and am used to looking at x-rays) and we could see lots of arthritis but no obvious lesions. She will send them to be read by the radiologist, but it really looks like we dodged the bullet this time. She recommended he stop the muscle relaxant and the Oxycodone since it wasn't doing much, and start taking lorazepam (generic Ativan) 3 or 4 times a day instead. Right now he is relaxed enough to take a nap - good!

When we got home I was surprised to find how tired I felt. Of course - I was all geared up for battle, ready for another course of radiation therapy, etc. Rationally, I shouldn't have been, but my emotions responded. Crisis averted, whew, I slumped.

This coming Monday, we are going to Colorado Springs to the cardiologist, to get Doug's heart meds adjusted. His blood pressure is still lower than it should be, resulting in some dizziness. This coming Thursday, we drive back to the Springs for Doug's endoscopic ultrasound.

Here's a tip that I hope might help someone - you can make an easy muscle warmer by putting two pounds (or a little less) of raw rice in a tube sock. Tie the end shut and heat in microwave for one minute, give or take. Easy, cheap and works like a charm.

On this Good Friday, I am humbled and awed by how much God loves us.

Blessings to all.

Roller Coaster - feeling better again

For the last three days Doug has been able to eat normally; he even gained a pound. This is a huge relief, and I am very thankful. There is  no explanation for the sudden change. I attribute it to all the prayers being said for us.

I really don't think this 'stomach' problem has anything to do with the myeloma. Hopefully the EUS will shed light on what is going on.

All these ups and downs are like a roller coaster ride, and not a fun one. I think I am being taught patience and endurance. Both Doug and I have learned so much over the course of this journey - lessons that will benefit us in the long run. And these lessons will allow us to help others too.

Blessings to all.

Waiting for EUS

We finally got the EUS (endoscopic ultrasound) scheduled. Doug called the gastroenterology office three times to ask about it and make sure we hadn't fallen through the cracks. It isn't until April 12. A long time to wait. In the last few days, Doug has had that "feeling" in the upper abdomen again. If he eats too much he feels bloated and uncomfortable. He still has an appetite but eats smaller amounts. He is losing weight; good thing he had a few extra pounds to start with.

 This could be something relatively simple like a stricture of some kind. But we both know it could be more serious. We are not borrowing trouble, but we are not looking through rose colored glasses either.
Waiting when you really want something to happen is so hard!

Every day we put our trust in Christ, and we have His Peace.

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 

Gastroenterologist visit

Today we had the consult with the gastroenterologist specialist in Colorado Springs. Since Doug is feeling back to 'normal' now, the doc couldn't begin to say what was wrong. But he did say the ultrasound report should not have used the word "obstruction". He said if there had really been a true obstruction, Doug would have ended up in the ER and been very very sick. He feels it could have been a stricture of some kind.

The gastroenterologist said that testing would be a good idea, to rule out anything serious, since there was some dilation of the bile duct and pancreatic ducts. We agree. The doc laid out choices, starting with the least invasive - MRI. Doug can't have that due to his pacemaker. Next choice was CT scan with contrast. Doug can't tolerate contrast due to compromised kidney function. That leaves "upper endoscopic ultrasound" known as EUS. He said this is the gold standard test but it is invasive so they usually do the other tests first.

Think of colonoscopy, with differences. After IV sedation, a tube called an endoscope is inserted via the mouth. On the end of the endoscope is a camera and an ultrasound transducer. Images are more accurate and detailed than traditional ultrasound because the transducer is close to the organs.

Only two physicians out of this speciality group do the EUS, so we have to wait for it to be scheduled. That's okay.

Feeling Better

Starting the last two days, Doug is feeling a lot better. His blood pressure has stabilized and the discomfort is less. He is going on short walks with me. We think maybe the obstruction is resolving on its own - hope so!

We didn't get in with the gastroenterologist who comes to Salida, but we do have an appointment with one in Colorado Springs, for next week. Even though Doug is doing so much better, we will keep that appointment.

In trying to get an appointment, we learned that before one even gets an appointment with a specialist, the insurance company has to pre-approve it. I remember the days when physicians used to run medical care. And prescription drugs were not advertised on TV. I even remember when it was unethical for lawyers and physicians to advertise their services.

Doug had a repeat CBC blood test on Monday - his counts are up enough to start back on chemo.

Love to all.

Biliary Obstruction

We got the ultrasound results today: "biliary obstruction within the head of the pancreas."

The common bile duct carries bile from the liver to the gallbladder and small intestine. The duct goes through the head of the pancreas. A stone might cause an obstruction, but Doug had his gallbladder out serveral years ago.
We are being referred to a gastroenterologist, but his office was closed on Friday afternoon. We should get a call on Monday to schedule a consult.  We think surgery may be needed.

Meanwhile Doug feels "crummy" but is not in real pain. He also has mild pancreatitis. A couple of years ago he had severe pancreatitis which was intensely painful, so I'm very glad he doesn't feel as bad as he did then.

His blood pressure is better: 94/54 today. His color is better.
For now, he's laying low and eating a low fat diet. He's lost 10 pounds over the last two weeks, but he was a bit overweight to start.

This is a detour on the myeloma journey!

Waiting

Doug had the abdominal ultrasound done this morning. We'll probably have to wait until the appointment Friday to get the results - unless something serious is found, in which case I hope we get a phone call.

He hasn't had any more dizzy spells, but he avoids standing up for more than a few minutes. I can see a slight yellowish cast to his skin now, but the whites of his eyes are still white. He is not having pain, but what he describes as a 'tight, lumpish' feeling in the upper abdomen. The blood tests did not indicate liver problems, so that makes me feel a bit better.

Waiting is hard. Doug and I both have learned to focus on staying calm, but it's not always easy.

Give all your worries and cares to God, for He cares what happens to you.                        1 Peter 5:7

Not feeling good

We came home from Texas two weeks early. Got home Friday, after two and a half days travel, 950 miles. Doug drove most of the way, including a day of high winds, in spite of feeling lousy. I can't seem to drive more than an hour on straight flat highways - I get real drowsy and would probably cause a wreck. So it was by God's grace that we got home safely.

The last couple of weeks, Doug has not been feeling good. A variety of symptoms, including dizzy spells and upper abdominal discomfort. At first we thought we'd be able to stay for our grandson's Air Force graduation, but as he got worse, we decided to head for home while we still could. Getting stuck in Texas with a medical crisis is not high on our agenda.

Today Doug saw our Family Nurse Practitioner. I really wanted him to get a good overall check, and not go to the oncologist just yet. Don't want that specialist tunnel vision when the symptoms are vague.
Blood work shows Doug is anemic - no surprise there. Blood pressure was 70/50. A lot of blood counts were low, some possibly due to chemo. The FNP lowered the dose of Coreg which should help the BP. She ordered an ultrasound of the abdomen which we will get Wed. So we don't know yet just what is going on.

Meanwhile we are very glad to be home, close to familiar doctors and friends. I am sad to miss Ryan's graduation, but our son will be going and promises to take photos.

Update: the oncology office called this afternoon. On the basis of the low blood counts and the way Doug is feeling, the oncologist wants to hold off on the Revlimid for one week and repeat the blood test in a week.

Blood Counts Good

We are at our RV park near Hondo Texas. Doug had his monthly blood draw done a few days ago; we got results, and they are good. Some values are a bit high, some a bit low, but that's due to the chemo. His light chain numbers are right where we want to see them - whew. His BUN and Creatine are better than last month. He's been trying to eat low carb, but blew the diabetic diet at a Chinese buffet. It was during the one week a month when he is off Revlimid and has working taste buds, so he enjoyed it. He continues to tire easily, but that's what naps are for. We've been taking daily walks.

We've been enjoying meeting up with some friends here. This area is getting some much needed rain, but we've also had nice sunny days.

We are selling our big 5th wheel RV. We have a buyer already, so we are glad of that. We decided that since Doug needs to check in monthly with the doc, it doesn't make financial sense to come all the way down south and stay only a month or so. We'll sell the lot back to the Co-op.

We are 'cheating' with doctor's permission, and staying here to see our oldest grandson graduate from Air Force basic training March 9 at Lackland AFB. We're excited to be able to attend that.

I want to share this with you. It's from Max Lucado's 'UpWords':

"You have a God who hears you, the power of love behind you, the Holy Spirit within you, and all of heaven ahead of you. If you have the Shepherd, you have grace for every sin, direction for every turn, a candle for every corner, and an anchor for every storm. You have everything you need."

Love to all.

BUN Up, need to drink more!

Today was Doug's Zometa infusion. Before every infusion, he gets a blood draw to check the kidney values (BUN and Creatinine), since the Zometa can be hard on kidneys. Today his BUN was 28. Last month it was 20, which is on the high end of normal. Creatinine was 1.4 today (high but stable for Doug). BUN is affected by hydration, or lack of.

So Dr. M ordered a reduction in the Zometa dose, and ordered it be given with one liter of fluid. Takes a long time for a liter to drip in.

Doug thinks he has been drinking a lot, but he takes small sips, so doesn't actually drink as much as he needs. Today the nurse got on his case, in a nice way. Told him he needs to 'guzzle' instead of sipping!  Just what I had been telling him; but it has more effect coming from someone else. He's supposed to drink at least two liters a day, and three is even better.

Poor guy - he's hearing "don't eat that, eat this"; "drink more"; "exercise more" - yada yada yada. Can't blame him for putting his earbuds in!

We leave in the morning for Texas. This is our first time traveling without dogs in tow. We miss the dogs but sans dogs is much easier. Life is good.

Love to all.

From my "Jesus Calling" book:
"My Face is shining upon you, beaming out Peace that surpasses all understanding. You are surrounded by a sea of problems, but you are face to face with Me, your Peace. As long as you focus on Me, you are safe."

"Officially Diabetic"

Doug's blood sugar has been rising slowly over the last few years. So a few days ago he went to our Family Nurse Practitioner for a repeat hemoglobin A1c test. (The cancer specialists have 'tunnel vision' like most specialists - they only look at one aspect of health.)
This most recent A1c test had a result of 7.4, which according to our FNP means that now Doug is "officially diabetic".  His blood glucose was 144.
The dexamethasone is no doubt elevating the blood sugar. After consulting with physicians, the consensus is to control it with diet and exercise and not add any drugs right now. That seems to be a good sensible approach.

We can't blame it all on the dex -- for years Doug has followed a poor diet. Even suggestions and nagging by the wife hasn't had much effect. He eats everything a typical ten year old boy would like, and has always had an aversion to 'healthy stuff'. But now he isn't going to be able to get by with that. He's going to really try to eat better. Before the relapse pulled the rug from under us, we had started to count carbs and eat only the 'good carbs'. Now we have to get back to that.

The exercise part - during the months that Doug's hip pain was so intense, he could walk only very short distances, and so became sedentary. Now the hip pain is mostly gone, so he has started walking a little more each day. In addition to walking, we got an exercise band to use at home. Need to build up those muscles again.

Good news is that we are leaving next week for a visit to Texas, where we have a lot in a private RV community. Doug is looking forward to warmer weather. We'll stay about two months, then we need to head home to keep up with doctor visits.

The road on this part of the Myeloma Journey is relatively smooth, with only a bumpy part here and there.
 Love to all.

"The essence of philosophy is that a man should so live that his happiness shall depend as little as possible on external things."    Epictetus 

Great News

Today was the oncology visit; we got the results of the light chain assay. Doug has had an amazingly wonderful response to the Rev/dex chemo. The light chains are now down into the normal range! After just one cycle of chemo, the Lambda light chains went from 83 to 1.95 mg/dL. Wow. What a relief; we had steeled ourselves for possible bad news. Even the doc was happily surprised by the dramatic response.

Doug's kidney function has improved too. The GFR is now up to 70. We'll take it! Because of the kidney improvement, the Revlimid dose can be upped to 25 mg where it should be.

Doug will stay on the Revlimid/dex combo for 6 to 12 months, as well as the Zometa. Then the Revlimid dose can be lowered to a maintenance dose. That will continue as long as it is working.
At some point, the multiple myeloma cancer cells stop responding to whatever drug was working. When that happens we'll need to move on to the next drug. But hopefully that won't be for a long time.

We are so very grateful. We give praise to God and thanks to all who pray for us.
Love to all.

“You thrill me, Lord, with all you have done for me! I sing with joy because of what you have done.”     Psalm 92:4

New Year Prayer

Doug and I went to church today, and after a wonderful service we were blessed to work in the kitchen serving rolls, coffee and juice. Our church and the people in it always refresh our spirits.

I found this anonymous New Year's prayer; it spoke to me and I hope you enjoy it too:


May God make your year a happy one!
Not by shielding you from all sorrows and pain,
But by strengthening you to bear it, as it comes;
Not by making your path easy,
But by making you sturdy to travel any path;
Not by taking hardships from you,
But by taking fear from your heart;
Not by granting you unbroken sunshine,
But by keeping your face bright, even in the shadows;
Not by making your life always pleasant,
But by showing you when people and their causes need you most,
and by making you anxious to be there to help.
God’s love, peace, hope and joy to you for the year ahead.