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.