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.
Friday, August 24, 2012
Thursday, August 9, 2012
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.
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.
Sunday, August 5, 2012
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
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
Wednesday, August 1, 2012
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.
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.
Monday, July 30, 2012
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.
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.
Tuesday, July 24, 2012
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.
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.
Friday, July 13, 2012
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.
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.
Subscribe to:
Posts (Atom)
