Not one, but two of them!
First was the CAT Scan biopsy. They used the CAT scan for guidance to get the biopsy of the lymph node.
This is to confirm if he has developed another cancer or if it's myeloma related. Dr. J was most comforting to Tony during the procedure. He shared with us that often, when these things grow fast, they respond quickly to chemo. I was not allowed inside. They gave him a local for numbing and proceeded. Minimal pain.
The second one was more difficult, Bone marrow biopsy. To rule out leukemia. He's been on bone strengthening medication so to collect the bone marrow and bone sample was a bit more difficult. Dr. C did this on the back part of the hip bone. For this I was in the room and believe you me, Tony was very brave during this procedure. It was more painful.
All done by around 11am.
So now we wait for a follow up appt on Wednesday or Thursday for the results. It's going to be a long few days........This part I think is worse, for me at least.
Tony continues to have shortness of breath when walking. His legs are week from being in hospital for 4 days.
Oh, the Friday's blood work went well and they released him. We were home after 5pm.
Had dinner with the boys and some company.
A restless night......
Next blog will be Wednesday or Thursday.
Thank you to family and friends for all your support!
Saturday, August 24, 2013
Thursday, August 22, 2013
Nothing really today
They were supposed to do a CAT scan biopsy this morning. Supposed to. But someone else was more urgent so it is now scheduled for Friday morning.
Also, the doctor wants to do a bone marrow biopsy to rule out more things. That's taking place Friday morning too.
So, we wait......
tick tock, tick tock.
I believe they will release him after all the procedures, but not confirmed yet. Not sure I want him in my care. His breathing is still an issue. He cannot walk far without being winded.
Lots of prayers needed everyone.
Come on. We can beat this!
Also, the doctor wants to do a bone marrow biopsy to rule out more things. That's taking place Friday morning too.
So, we wait......
tick tock, tick tock.
I believe they will release him after all the procedures, but not confirmed yet. Not sure I want him in my care. His breathing is still an issue. He cannot walk far without being winded.
Lots of prayers needed everyone.
Come on. We can beat this!
Wednesday, August 21, 2013
A diffult day
I was back at the hospital around 11am. I had so much work and things left unattended that needed attending. I was in touch with Tony and my sisterinlaw, the babysitter during the time I was away. He had a very restful night.
Lots of doctors and nurses tending to him throughout the morning. I'm glad my sisterinlaw was there to listen in. Most often you need two people to remember all the questions and the answers too!
Good news is that he did not have another "episode" today. Oxygen mask is always by his side as comfort. CAT scan from Tuesday showed 4 rather large lymph nodes. (around the 3" range)
They did a full body x-ray (looking for blood clots) and a CAT scan of lung area and throat (looking for more swollen lymph nodes. (all clear there, whew)
They are attempting the blood transfusion again as his hemoglobin continues to drop below 80. They will let it drip at a very slow pace throughout the night. Two units.
In the morning they will be doing a CAT scan biopsy. Basically numbing the area first then inserting the needle to extract the fluid.
Causes of tremors: could be myeloma related or infection. So far, cultures aren't showing anything. (I have a feeling I'm spelling cultures wrong)
Causes of breathlessness: Lymph node pressing on something, myeloma related or low hemoglobin.
Words like aggressive, lymphoma and leukemia were mentioned.......
Not sure the plan for releasing him from hospital.
Not sure if his appointment with Princess Margaret Hospital is still a go. (it's at noon Thursday)
Not sure if harvesting will take place or yet another delay.
Plan is to be back at the hospital for 8am in time for all the doctors to come and discuss further.
Nite everyone
Needing every finger crossed and lots of prayers!
Lots of doctors and nurses tending to him throughout the morning. I'm glad my sisterinlaw was there to listen in. Most often you need two people to remember all the questions and the answers too!
Good news is that he did not have another "episode" today. Oxygen mask is always by his side as comfort. CAT scan from Tuesday showed 4 rather large lymph nodes. (around the 3" range)
They did a full body x-ray (looking for blood clots) and a CAT scan of lung area and throat (looking for more swollen lymph nodes. (all clear there, whew)
They are attempting the blood transfusion again as his hemoglobin continues to drop below 80. They will let it drip at a very slow pace throughout the night. Two units.
In the morning they will be doing a CAT scan biopsy. Basically numbing the area first then inserting the needle to extract the fluid.
Causes of tremors: could be myeloma related or infection. So far, cultures aren't showing anything. (I have a feeling I'm spelling cultures wrong)
Causes of breathlessness: Lymph node pressing on something, myeloma related or low hemoglobin.
Words like aggressive, lymphoma and leukemia were mentioned.......
Not sure the plan for releasing him from hospital.
Not sure if his appointment with Princess Margaret Hospital is still a go. (it's at noon Thursday)
Not sure if harvesting will take place or yet another delay.
Plan is to be back at the hospital for 8am in time for all the doctors to come and discuss further.
Nite everyone
Needing every finger crossed and lots of prayers!
Well, not good news. Again
It's 3:15am and I'm exhausted so forgive my way of telling this latest update.
Last Thursday, we went to the usual oncology appointment.
We mentioned many things to her. Shortness of breath, big belly, weak, tired, back is worse, low grade fevers at night (38.1 was the highest it ever got) night sweats and a dry cough.
Blood work that day showed the myeloma numbers going down, which is good but his hemoglobin was at 90, which explains tiredness. The steroids give you chipmunk cheeks, which he has and most likely the large belly is from steroids. OK. I'll take that......I tell the doctor that I'm concerned about the lymph node and wonder if that's why his belly is huge. Nope.
Monday evening he was exhausted and went to bed around 9:30-10:00. Yelled downstairs to me to say he was chilly and shaking. I didn't think much of it. About 10 minutes later, he yelled down that I should go up to him and help. I dropped everything and went upstairs. When I entered the bedroom, he was shaking from head to toe. Badly. I curled up beside him to warm him up but he wasn't feverish. The shakes were very wild. I took his temperature. 36.2 no fever. He was struggling to catch his breath while shaking. Difficulty talking. Remember, walking from one room to another made him winded, imagine this. I couldn't calm him down to catch his breath. His eyes looked panicked. Thank goodness Robert was home. I just quickly decided to call 911 for help.
Firemen came first. I told Robert to tell them to make sure they come inside with oxygen equipment. They described his shaking as tremors. Oxygen was given. Blood pressure and pulse. No fever. From the start to calming him, it took about 40 minutes. I don't remember any of the numbers. There were so many people in my bedroom, doing many things and asking many questions. After calming him down, he walked down to the gurney and they took him away. I followed with my vehicle.
In emergency, they took an x-ray, blood samples and urine. Nothing wrong really. Hemoglobin dropped to 80. At this point, we still had no answers. I stayed by his side the entire night. He rested in the emergency. Early morning my sister-in-law took over while I slept. The doctor ordered a blood transfusion. Two units. (Princess Margaret said it was ok and it wouldn't interfere with stem cell collection next week. As long is blood was Irradiated) Plus a CAT scan of his belly to compare the lymph node from back in April to today.
As they were giving him the transfusion, I overheard him tell the nurse that he was getting chilly......OMG. I looked up and his leg began shaking. then the other one. then his torso and then the rest. Just like at home. Nurse stopped the transfusion, thinking he was reacting to the unit of blood. Called the doctor. I explained that it was the exact way as the night we brought him in. Blood pressure was 187 over something. No fever. The doctor witnessing all this happened to be a respiratory specialist. He was scratching his head. Again, this seems to be the theme with Tony. They all say, "never seen this happen before". ya, well figure it out! Fast. This doctor was great. He looked over the CAT scan and noticed that he had more than one enlarged lymph node.......not good news. Suspects it is most likely pressing on his diaphragm and making him winded. However, can't explain the tremors. So, more blood work and tests. They have ordered another CAT scan of lung and throat area. I stayed till about 2am and left him resting with the oxygen mask. Night sweats continue. My sister-in-law is with him. Me, I've gotten a second wind now. My fingers hurt from typing.....going to bed now.....I'll keep you all posted.
Keep us in your prayers everyone.
Thanks.
Mary
Last Thursday, we went to the usual oncology appointment.
We mentioned many things to her. Shortness of breath, big belly, weak, tired, back is worse, low grade fevers at night (38.1 was the highest it ever got) night sweats and a dry cough.
Blood work that day showed the myeloma numbers going down, which is good but his hemoglobin was at 90, which explains tiredness. The steroids give you chipmunk cheeks, which he has and most likely the large belly is from steroids. OK. I'll take that......I tell the doctor that I'm concerned about the lymph node and wonder if that's why his belly is huge. Nope.
Monday evening he was exhausted and went to bed around 9:30-10:00. Yelled downstairs to me to say he was chilly and shaking. I didn't think much of it. About 10 minutes later, he yelled down that I should go up to him and help. I dropped everything and went upstairs. When I entered the bedroom, he was shaking from head to toe. Badly. I curled up beside him to warm him up but he wasn't feverish. The shakes were very wild. I took his temperature. 36.2 no fever. He was struggling to catch his breath while shaking. Difficulty talking. Remember, walking from one room to another made him winded, imagine this. I couldn't calm him down to catch his breath. His eyes looked panicked. Thank goodness Robert was home. I just quickly decided to call 911 for help.
Firemen came first. I told Robert to tell them to make sure they come inside with oxygen equipment. They described his shaking as tremors. Oxygen was given. Blood pressure and pulse. No fever. From the start to calming him, it took about 40 minutes. I don't remember any of the numbers. There were so many people in my bedroom, doing many things and asking many questions. After calming him down, he walked down to the gurney and they took him away. I followed with my vehicle.
In emergency, they took an x-ray, blood samples and urine. Nothing wrong really. Hemoglobin dropped to 80. At this point, we still had no answers. I stayed by his side the entire night. He rested in the emergency. Early morning my sister-in-law took over while I slept. The doctor ordered a blood transfusion. Two units. (Princess Margaret said it was ok and it wouldn't interfere with stem cell collection next week. As long is blood was Irradiated) Plus a CAT scan of his belly to compare the lymph node from back in April to today.
As they were giving him the transfusion, I overheard him tell the nurse that he was getting chilly......OMG. I looked up and his leg began shaking. then the other one. then his torso and then the rest. Just like at home. Nurse stopped the transfusion, thinking he was reacting to the unit of blood. Called the doctor. I explained that it was the exact way as the night we brought him in. Blood pressure was 187 over something. No fever. The doctor witnessing all this happened to be a respiratory specialist. He was scratching his head. Again, this seems to be the theme with Tony. They all say, "never seen this happen before". ya, well figure it out! Fast. This doctor was great. He looked over the CAT scan and noticed that he had more than one enlarged lymph node.......not good news. Suspects it is most likely pressing on his diaphragm and making him winded. However, can't explain the tremors. So, more blood work and tests. They have ordered another CAT scan of lung and throat area. I stayed till about 2am and left him resting with the oxygen mask. Night sweats continue. My sister-in-law is with him. Me, I've gotten a second wind now. My fingers hurt from typing.....going to bed now.....I'll keep you all posted.
Keep us in your prayers everyone.
Thanks.
Mary
Sunday, August 11, 2013
Almost time
Can't believe it's been a while since we've blogged. Seeing the doctor once a month vs once a week really puts a toll on your imagination and not knowing.
We are days away from seeing Dr. P. at Humber River Hospital. (Thursday) Can't wait to hear his results on blood work. This once a month thing is stressful. Can't believe how it plays with my mind.
Tony's gout is gone! YAY
I treated him to a nice steak last night for dinner. YUM
He has been feeling weak and more tired lately. He drags his feet when walking. Getting up from a sitting position to standing up is difficult. His back continues to hurt. He is back to taking the 12 hour morphine morning and night to help cope with the pain.
For the past 7 days, he's had a persistant cough. Don't want it to get worse. I felt I needed to take his temperature last night and again this afternoon, as he felt warm to the touch and his eyes looked feverish. Highest temperature was 38.1. For now, I just monitor.....
He is currently on 7 days off of all chemo meds, so his energy is very low. I try to make him walk and do more for himself, but when I do, he just falls asleep afterwards. Out cold! Fast. Don't like seeing him this way. His muscles are gone. Small tasks like strength in opening up jars and bottles is impossible. Even bottled water cannot be opened by him. I see him dwindling before my eyes.
Hurry up Princess Margaret Hospital appointment. (August 22)
Hurry up stem cell transplant.
I want my old husband back.
:(
We are days away from seeing Dr. P. at Humber River Hospital. (Thursday) Can't wait to hear his results on blood work. This once a month thing is stressful. Can't believe how it plays with my mind.
Tony's gout is gone! YAY
I treated him to a nice steak last night for dinner. YUM
He has been feeling weak and more tired lately. He drags his feet when walking. Getting up from a sitting position to standing up is difficult. His back continues to hurt. He is back to taking the 12 hour morphine morning and night to help cope with the pain.
For the past 7 days, he's had a persistant cough. Don't want it to get worse. I felt I needed to take his temperature last night and again this afternoon, as he felt warm to the touch and his eyes looked feverish. Highest temperature was 38.1. For now, I just monitor.....
He is currently on 7 days off of all chemo meds, so his energy is very low. I try to make him walk and do more for himself, but when I do, he just falls asleep afterwards. Out cold! Fast. Don't like seeing him this way. His muscles are gone. Small tasks like strength in opening up jars and bottles is impossible. Even bottled water cannot be opened by him. I see him dwindling before my eyes.
Hurry up Princess Margaret Hospital appointment. (August 22)
Hurry up stem cell transplant.
I want my old husband back.
:(
Tuesday, July 23, 2013
The Latest in Myeloma news
We see the doctor once a month now, so blogging has been less frequent.
Tony continues to be on Revlimed and Dex.
His gout occassionally irritates him, worse when off Dex. I've been very strict on his diet, when I can control his food choices! So lately, it's getting better.
His back pain is back, but he says it's a different pain. Spasms. Need to ask the doctors next time. Not sure what's going on with that. In the meantime, here's a great video.
MMRF = Multiple Myeloma Research Foundation
"Recently, MMRF Founder and CEO Kathy Giusti was interviewed live on Bloomberg TV by Pimm Fox on theTaking Stock show. The segment talked about the history of the MMRF, how it is collaborating with partners around the world to find cures and the potential for big data to transform the way multiple myeloma is treated."
It's only 3 1/2 minutes long. Watch the television show here:
http://www.bloomberg.com/video/championing-the-fight-against-cancer-aZXcYZyzRamYGesTNw5Myw.html
Tony continues to be on Revlimed and Dex.
His gout occassionally irritates him, worse when off Dex. I've been very strict on his diet, when I can control his food choices! So lately, it's getting better.
His back pain is back, but he says it's a different pain. Spasms. Need to ask the doctors next time. Not sure what's going on with that. In the meantime, here's a great video.
MMRF = Multiple Myeloma Research Foundation
"Recently, MMRF Founder and CEO Kathy Giusti was interviewed live on Bloomberg TV by Pimm Fox on theTaking Stock show. The segment talked about the history of the MMRF, how it is collaborating with partners around the world to find cures and the potential for big data to transform the way multiple myeloma is treated."
It's only 3 1/2 minutes long. Watch the television show here:
http://www.bloomberg.com/video/championing-the-fight-against-cancer-aZXcYZyzRamYGesTNw5Myw.html
Tuesday, July 9, 2013
Harvesting is scheduled!
Seven days ago we received an email from the transplant coordinator asking which cycle and day we were on with Tony's medication. At the time we were on Cycle 2, Day 14. (each cycle is 28 days) That's how they keep track of each individuals schedule. Pretty good system actually.
The transplant coordinator wanted to schedule Tony in for harvesting between cycle 2-3 or 3-4.
I reminded him of Tony's swollen lymph node in his abdomen and we needed confirmation that it was shrinking before transplant. His blood work is excellent, but to qualify for a transplant, you have to be cancer free.
This was his reply:
We’re going to try and collect cells and store them, for later use. Tony will have to be restaged to ensure how well he’s responded before we actually do the transplant. Make sure his proteins continue to drop and masses continue to shrink. We just want to be careful about how much revlimid we give before we try and collect. Revlimid is a little rough on the bone marrow and can make collection a little more difficult. So this is what makes the timing of everything interesting.
So, we've been waiting and waiting for a date and today I finally emailed to say, "did you forget us?"
His reply was that Tony is scheduled for August 26 to begin with the high dosage of chemo to prep him for harvesting his stem cells which will be two weeks after that.
We see the specialist at Princess Margaret Hospital before that so we should be receiving more info at that time.
In the meantime, we see the doctor at Humber River Hospital for treatment and follow up, once a month, which is next week.
Overall, with his new meds, he's doing great.
Next update after Humber River Hospital.
Keep the best wishes and prayers coming. We love it.
The transplant coordinator wanted to schedule Tony in for harvesting between cycle 2-3 or 3-4.
I reminded him of Tony's swollen lymph node in his abdomen and we needed confirmation that it was shrinking before transplant. His blood work is excellent, but to qualify for a transplant, you have to be cancer free.
This was his reply:
We’re going to try and collect cells and store them, for later use. Tony will have to be restaged to ensure how well he’s responded before we actually do the transplant. Make sure his proteins continue to drop and masses continue to shrink. We just want to be careful about how much revlimid we give before we try and collect. Revlimid is a little rough on the bone marrow and can make collection a little more difficult. So this is what makes the timing of everything interesting.
So, we've been waiting and waiting for a date and today I finally emailed to say, "did you forget us?"
His reply was that Tony is scheduled for August 26 to begin with the high dosage of chemo to prep him for harvesting his stem cells which will be two weeks after that.
We see the specialist at Princess Margaret Hospital before that so we should be receiving more info at that time.
In the meantime, we see the doctor at Humber River Hospital for treatment and follow up, once a month, which is next week.
Overall, with his new meds, he's doing great.
Next update after Humber River Hospital.
Keep the best wishes and prayers coming. We love it.
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