Today is Dec.15 and we have just come back with a meeting at the pain clinic. I don't know what happened to the first group of medical people we met with, however I am so pleased with the doctor and pharmacist we met with today. We spent a lot of time with them --almost an hour and a half. They had read Bob's chart and were familiar with what had been happening. They also had a plan. From this point forward the pharmacist will have the lead. Altho, he explained, when Bob's pain is stabilized and under control the prescribing goes back to Dr. Bahlis. Their case load is huge with drug care for cancer patients plus the palliative cancer care. Bob is staying with the Lyrica and Cymbalta. These are for the neuropathy plus could be having an effect on the bone pain as well. The plan is to use only one opioid which will be hydromorphone. This will be in various amounts and strategies until the right recipe is found. Bob said that he could live with pain at a level 4. That would be acceptable to him. So now we wait until the pharmacist phones this afternoon as to how to go from here. Bob has taken the agreed upon dose when we got home. We will also be receiving a detailed instruction paper to follow once our meds are at our pharmacy. HURRAH!!!!! Our local pharmacists love us to pieces. Prescriptions are always changing and each time we go in, Pharmacist Bob and Pharmacist Ali just smile and smile--- they have been great at caring for us.
The doctor we saw today is great. She checked the pain areas. She looked at the PET scans again and checked again. She is going to get in touch with Dr. Bahlis so they can co ordinate any further tests. Dr. Murray wants to find exactly where the pain is originating. One possible next step is radiation on the hip, pelvis area ---where there is a tumour. That does not seem to be where the pain is coming from tho.
It will be awesome when the new cancer centre is built. Sadly our former provincial governments dithered around making a decision about building the centre for a large number of years. For all I know it may have been completed or almost completed by now. Today Bob and I saw the reality of that. We knew that Tom Baker was beyond capacity but this took the cake: The doctor had booked a room to see us in however someone was using the room. Then a switch happened and we could go in and the other folks went elsewhere. This room had the title QUIET ROOM and had a love seat and 2 comfy side chairs--not an examining room. The room was super hot with a noisy fan. This room I was thinking was where a family perhaps came to be told a loved one had a cancer diagnosis. When the doctor wanted to do an examination of Bob she went out to find a room but there was nothing available. So part of the exam was done with Bob standing up.. When he was to lie down well it was super funny--feet over one end and head up one love seat arm. The doctor was not impressed and apologized profusely. The shortage in cancer funding is huge especially when we consider how many people are dealing with some form of cancer or other.
In spite of the many hurdles and shortages that the professionals at Tom Baker Cancer Care deal with, they have all been more than caring and amazing. They do more than their very best, to treat each patient and family with respect and care. Bob and I are grateful for everyone of these professionals, whom we have dealt with over the past eight years. We are also grateful to our Lord Jesus Christ for allowing us to live in this province at this time.
Thursday, December 15, 2016
Monday, December 12, 2016
Christmas 2016
I am sure that each of you hear and say;"wow, Christmas already".Hardly seems possible, in some ways, how quickly the seasons pass.
Bob's journey continues on. The road seems harder and we are tired of the seemingly never ending bumps and detours.
Since my last blog Bob totally ditched the sleep machine. He very often had panic attacks with the mask on. We decided that he did not really need one more thing to deal with.
Bob continues going to the hospital once a month for the daratumumab infusion. This infusion takes 4 hours and he is able to sleep through most of it. Bob is still on the pomalidomide (pomalyst).. The protocol for that is taking the pills orally for 3 weeks and having a week off. Added to the regime now is cyclophosphomide. Taken orally every other day. Plus the dexamethazone for 3 days around the time of the infusion. Those are the chemo drugs.
Bob spent a few days in hospital over the Nov/Dec calender flip. He was really sick. The big concern was the neutrophils being down to point 3, so with really no immunity he was in isolation in emergency------most interesting situation and very challenging for Bob. He was given a number of Filgrastm needles in the belly that get those neutrophils reproducing. Five days later the blood test showed them to be at 3. Therefore onward and upward with the next round of chemo. Lots of stories about this hospital stay!!!!
We were hoping for a chemo break but both our family doc and the oncologist noted that with the protein number going down we don't want to jeopardize what the chemo has accomplished.The kappa lambda free ratio is 80.41.
The other thing that happened in the hospital is the doctors tried to get the pain control meds under control. One thought was that he was actually overdosed. We were at the new hospital near our place so they had totally different ideas than the Pain Clinic and Oncology Dept over at Foothills. All the symptoms are under control and Bob is back down to hydromorphine again. He had already done the Fentanyl and methadone. He seems to be holding the pain but the opioid wave may be coming to an end as he does have some more pain again. Once again we are working with the pain clinic. Half way through the month Bob goes for blood work to make sure all is well . He had been going only once a month.
So much yuck detail but so many things I do not want to forget.
Bob's dad's health is deteriorating. Seems like his mind is going too//- dementia or cancer??? Very hard for them. The doctors are not doing any more treatments. He had radiation. Reta also said they didn't think they would do more treatment even if it was offered. Pray for God's peace and mercy for both dad and Reta.
************ *************
Merry Christmas to each of you. Celebrate this Christmas season with family and friends and enjoy much happiness in even the smallest joy.
In Jesus, we find more gifts than our hearts can ever imagine.
May I ask that you give a thought to why Jesus came to earth and as a baby.
For in Christ the fullness of God lives in a human body. Col. 2:9
With gratitude to those who percivier in prayer for Bob and me.
Bob's journey continues on. The road seems harder and we are tired of the seemingly never ending bumps and detours.
Since my last blog Bob totally ditched the sleep machine. He very often had panic attacks with the mask on. We decided that he did not really need one more thing to deal with.
Bob continues going to the hospital once a month for the daratumumab infusion. This infusion takes 4 hours and he is able to sleep through most of it. Bob is still on the pomalidomide (pomalyst).. The protocol for that is taking the pills orally for 3 weeks and having a week off. Added to the regime now is cyclophosphomide. Taken orally every other day. Plus the dexamethazone for 3 days around the time of the infusion. Those are the chemo drugs.
Bob spent a few days in hospital over the Nov/Dec calender flip. He was really sick. The big concern was the neutrophils being down to point 3, so with really no immunity he was in isolation in emergency------most interesting situation and very challenging for Bob. He was given a number of Filgrastm needles in the belly that get those neutrophils reproducing. Five days later the blood test showed them to be at 3. Therefore onward and upward with the next round of chemo. Lots of stories about this hospital stay!!!!
We were hoping for a chemo break but both our family doc and the oncologist noted that with the protein number going down we don't want to jeopardize what the chemo has accomplished.The kappa lambda free ratio is 80.41.
The other thing that happened in the hospital is the doctors tried to get the pain control meds under control. One thought was that he was actually overdosed. We were at the new hospital near our place so they had totally different ideas than the Pain Clinic and Oncology Dept over at Foothills. All the symptoms are under control and Bob is back down to hydromorphine again. He had already done the Fentanyl and methadone. He seems to be holding the pain but the opioid wave may be coming to an end as he does have some more pain again. Once again we are working with the pain clinic. Half way through the month Bob goes for blood work to make sure all is well . He had been going only once a month.
So much yuck detail but so many things I do not want to forget.
Bob's dad's health is deteriorating. Seems like his mind is going too//- dementia or cancer??? Very hard for them. The doctors are not doing any more treatments. He had radiation. Reta also said they didn't think they would do more treatment even if it was offered. Pray for God's peace and mercy for both dad and Reta.
************ *************
Merry Christmas to each of you. Celebrate this Christmas season with family and friends and enjoy much happiness in even the smallest joy.
In Jesus, we find more gifts than our hearts can ever imagine.
May I ask that you give a thought to why Jesus came to earth and as a baby.
For in Christ the fullness of God lives in a human body. Col. 2:9
With gratitude to those who percivier in prayer for Bob and me.
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