His numbers are going as expected. Hemoglobin continues to hover around 82-84. No transfusion necessary yet.
His platelets are getting low.....65.... expected.
And, his white blood count is 2.8. This is expected as well.
Not sure when they will give him blood to compensate for this. I'm dragging my behind this morning as I know I'll be there tonight with my husband for that Midnight countdown. Wouldn't miss being with him for the world.
Looking forward to spending New Year's Eve at the hospital.
Stay safe everyone.
Don't drink and drive.
Tuesday, December 31, 2013
Sunday, December 29, 2013
No changes
These past two days have been the same. He is doing great. Numbers are beginning to go down, which is expected, with Thursday being his lowest and afterwards climbing to normal. Will still be in hospital for about another 10-12 days.
Only issue is constipation. Hospital food and chemo has that effect on people :(
Although we have been bringing him food. Steroids is giving him an appetite, so he eats both.
And yes, we've tried everything.
One thing left to try......but he says not yet.
Hope it happens overnight.
Need your prayers for something a little different tonight. LOL
Only issue is constipation. Hospital food and chemo has that effect on people :(
Although we have been bringing him food. Steroids is giving him an appetite, so he eats both.
And yes, we've tried everything.
One thing left to try......but he says not yet.
Hope it happens overnight.
Need your prayers for something a little different tonight. LOL
Friday, December 27, 2013
December 27, 2013 - 11:15am Happy Birthday Tony!
Stem Cell Transplant Day.
The day we've been waiting for. Months and months of waiting for this day.
Humber River Hospital used to say "our job is to get you all ready for transplant day. That's the goal".
But, the many hurtles we faced delayed this day.
But it came!
My brother came with me to the hospital. I was glad to have company for the drive down, as well as during the procedure. Didn't think I did, but I did.
They had given him pre-meds about one hour before. Steroids and benedryl.
Also gave him anti nausea.
The nurse, before they began, explained that he would feel a funny taste in his mouth and a tickle, perhaps making him cough. So they gave him a breath mint. She said he might feel tingly and something with his abdominal area. Tony's face was so red before. She said it was the steroids. I think he was anxious. We all were. This took place in his regular hospital bed. I watched the lab technician who brought it over open the container where it was held frozen. All that was missing was the music like when you watch futuristic movies. I just felt like a miracle was about to happen. It was in a steel framed container about the size of 4" x 8" and about 1/2" thick. Both the technician and nurse kept checking the code numbers and spelling his name, checking and double checking they had the right patient and right stem cells. At one point, the technician spelled his name T.O.N.I. nope......repeat again. Perhaps they were nervous too. She took the pouch out of the steel container and put it in a water solution, temperature controlled to thaw out the stem cells. That took a couple of minutes. Didn't take long at all. You need about 2 million cells in order for this to take effect and Tony had 8 million. Oh, and they said that Tony would be emitting an odour that smelled like corn. It had to do with the additives to the collection of cells. But seeing that his sample was 8 million, he probably didn't need too much of this solution. I never did smell the odour during the day. Perhaps that's why? Don't know.
Then the technician gave the pouch to the nurse. Again, they checked the name and codes. All good. She hooked him up to the IV and began. They also said that his blood pressure would drop during this. And it did. He started at 153 and after about 2 minutes it had dropped to 133. She kept taking his blood pressure and temperature. The giving back of his stem cells took about 4-5 minutes. He did cough during this and the nurse pointed it out to him. He did feel the tickle weird feeling in his throat. She said it was his body reacting to the stem cells going through him.
WOW.
Cannot believe this day has finally come.
Appetite still good. Gout is gone. Nurses say tomorrow or Sunday appetite will diminish. For now, he is eating and loving food. As the days pass, his condition will be worse and the effects of chemo will appear. Five more days and he will be at his worst.
He has been so brave and courageous during this entire journey. So proud of him.
Happy Birthday Tony!
The day we've been waiting for. Months and months of waiting for this day.
Humber River Hospital used to say "our job is to get you all ready for transplant day. That's the goal".
But, the many hurtles we faced delayed this day.
But it came!
My brother came with me to the hospital. I was glad to have company for the drive down, as well as during the procedure. Didn't think I did, but I did.
They had given him pre-meds about one hour before. Steroids and benedryl.
Also gave him anti nausea.
The nurse, before they began, explained that he would feel a funny taste in his mouth and a tickle, perhaps making him cough. So they gave him a breath mint. She said he might feel tingly and something with his abdominal area. Tony's face was so red before. She said it was the steroids. I think he was anxious. We all were. This took place in his regular hospital bed. I watched the lab technician who brought it over open the container where it was held frozen. All that was missing was the music like when you watch futuristic movies. I just felt like a miracle was about to happen. It was in a steel framed container about the size of 4" x 8" and about 1/2" thick. Both the technician and nurse kept checking the code numbers and spelling his name, checking and double checking they had the right patient and right stem cells. At one point, the technician spelled his name T.O.N.I. nope......repeat again. Perhaps they were nervous too. She took the pouch out of the steel container and put it in a water solution, temperature controlled to thaw out the stem cells. That took a couple of minutes. Didn't take long at all. You need about 2 million cells in order for this to take effect and Tony had 8 million. Oh, and they said that Tony would be emitting an odour that smelled like corn. It had to do with the additives to the collection of cells. But seeing that his sample was 8 million, he probably didn't need too much of this solution. I never did smell the odour during the day. Perhaps that's why? Don't know.
Then the technician gave the pouch to the nurse. Again, they checked the name and codes. All good. She hooked him up to the IV and began. They also said that his blood pressure would drop during this. And it did. He started at 153 and after about 2 minutes it had dropped to 133. She kept taking his blood pressure and temperature. The giving back of his stem cells took about 4-5 minutes. He did cough during this and the nurse pointed it out to him. He did feel the tickle weird feeling in his throat. She said it was his body reacting to the stem cells going through him.
WOW.
Cannot believe this day has finally come.
Appetite still good. Gout is gone. Nurses say tomorrow or Sunday appetite will diminish. For now, he is eating and loving food. As the days pass, his condition will be worse and the effects of chemo will appear. Five more days and he will be at his worst.
He has been so brave and courageous during this entire journey. So proud of him.
Happy Birthday Tony!
Thursday, December 26, 2013
They call today, "zero minus 1 day"
Today, he received his chemo (Mephlan).
Before they gave it to him, they had him started on hydration through his IV around 5am. Also, one hour before the chemo, he was told to chew on ice chips to shrink up his blood vessels. This chemo destroys the lining of the mouth and throat. Chewing on the ice chips helps. Can't remember the name of the condition this causes. I'm getting bad at remembering new medical terms! Not like me. As well, he received steroids. Anyways, the chemo ran for 30 minutes. Didn't feel a thing. All day, no real reaction to this. Yet. Still has his appetite and taste for now. His roommate was going to leave this Friday. He has the same thing. But, today, his roommate developed diarrhea and the beginning of pneumonia......Gosh, this better not happen to Tony. It may, but it better not! Must remember to encourage walking alot during his stay.
Oh, and I forgot!!!!!!! Holy cow. Prior to Christmas Day, he indulged in beef and pork jerky. Well, the nag that I am kept saying it wasn't good for his gout. But, no, did he listen to me? Oh, and then for Christmas Eve dinner, we eat fish.....and my contribution was crab legs and his mom cooked shrimp. All excellent contributors to gout. So, Christmas day morning, he was beginning to feel the gout pains. Didn't tell me. This morning when I saw him, he couldn't walk. LOL So he confessed to me. Poor Tony. And me! I was so careful in food selections for his gout over the last several weeks, that I totally forgot about the fish. Fortunately, they weren't concerned about it effecting the chemo and transplant. By this afternoon, he was already feeling much better. Whew!
Tomorrow will be transplant day.
Tomorrow will be "zero" day.
Tomorrow will be his new birthday. December 27, 2013 at 11am. At least that's what all the Multiple Myeloma bloggers write. So I guess tomorrow's blog will be titled Happy Birthday to Tony.
Wednesday, December 25, 2013
Merry Christmas Everyone!
After months and months and months and months, this day has finally come!
Let me begin by saying that this is the first Christmas without my mom. Felt strange all day long. My morning was very difficult. Happy/nervous for Tony and a tremendous sadness of missing my mom today. Very emotional. I was gifted an angel ornament with my mom's name on it. Today I began a tradition. Wherever my brother and I are for Christmas, together, this angel ornament follows us. It was a touching moment with my brother putting this angel on his tree today. (sniffle sniffle)
Now, back to Tony. He was quiet and tired all day today. In fact, after a huge Italian meal, he fell asleep on the couch and slept with lots of Christmas noise all around him. Before we all departed our separate ways, we took a family photo by the tree.
We left my brother's house after 6pm to check in to the hospital. My son joined us, which was nice. I needed company on the drive home. (roads were really bad) We checked in with the nurse. They gave us a tour of the place. It was so warm, inviting and friendly. A great staff! They took his blood and did vital signs. His blood pressure was 173 over something.....that's high. He blamed it on the walking tour of the ward. (He had stopped taking high blood pressure pills because of his weight loss. It had become more normal). The doctor then came in and explained what would be happening in the next few days. Did a physical as well. After a while of lying in the bed, they took his blood pressure again. 150 over something. Better.
What's in store for the next two days:
At 5:30am they will begin hydration through IV.
At 11am they will give him his chemo dosage through IV. That runs for 30 minutes. (Can't remember the chemo name)
Friday, they do the transplant. Which is basically giving him back his own stem cells to help recover from the chemo. This is given back to him through the IV.
Chemo effects will begin after 7 days of getting it.
I shall keep my followers posted.
Good night everyone!
Hope your Christmas this year was a memorable one.
Let me begin by saying that this is the first Christmas without my mom. Felt strange all day long. My morning was very difficult. Happy/nervous for Tony and a tremendous sadness of missing my mom today. Very emotional. I was gifted an angel ornament with my mom's name on it. Today I began a tradition. Wherever my brother and I are for Christmas, together, this angel ornament follows us. It was a touching moment with my brother putting this angel on his tree today. (sniffle sniffle)
Now, back to Tony. He was quiet and tired all day today. In fact, after a huge Italian meal, he fell asleep on the couch and slept with lots of Christmas noise all around him. Before we all departed our separate ways, we took a family photo by the tree.
We left my brother's house after 6pm to check in to the hospital. My son joined us, which was nice. I needed company on the drive home. (roads were really bad) We checked in with the nurse. They gave us a tour of the place. It was so warm, inviting and friendly. A great staff! They took his blood and did vital signs. His blood pressure was 173 over something.....that's high. He blamed it on the walking tour of the ward. (He had stopped taking high blood pressure pills because of his weight loss. It had become more normal). The doctor then came in and explained what would be happening in the next few days. Did a physical as well. After a while of lying in the bed, they took his blood pressure again. 150 over something. Better.
What's in store for the next two days:
At 5:30am they will begin hydration through IV.
At 11am they will give him his chemo dosage through IV. That runs for 30 minutes. (Can't remember the chemo name)
Friday, they do the transplant. Which is basically giving him back his own stem cells to help recover from the chemo. This is given back to him through the IV.
Chemo effects will begin after 7 days of getting it.
I shall keep my followers posted.
Good night everyone!
Hope your Christmas this year was a memorable one.
Tuesday, December 24, 2013
We got the call !!!!!
The hospital called today at 1pm to say a bed is now available.
On Christmas Eve.
The best present ever.
On Christmas Eve.
Good news is that they asked if we celebrated Christmas and it would be ok with them if he checked in by 8pm on Wednesday, Christmas Day. If he went in today, all they would do is hydrate him. They said it could wait till tomorrow......WOOHOO!!!!
The best news ever AND we get to enjoy family time tonight and tomorrow.
So, after Christmas lunch tomorrow, off we go to check him in at the Hospital.
Thanks to everyone for your prayers and best wishes during this holiday season. Everyone has just been wonderful. And, my mom, for watching over Tony from Heaven.
This ice storm has put out many people. Many continue to be without power during these holidays. My heart goes out to them.
God bless you all during these festive holiday times.
Merry Christmas everyone.
On Christmas Eve.
The best present ever.
On Christmas Eve.
Good news is that they asked if we celebrated Christmas and it would be ok with them if he checked in by 8pm on Wednesday, Christmas Day. If he went in today, all they would do is hydrate him. They said it could wait till tomorrow......WOOHOO!!!!
The best news ever AND we get to enjoy family time tonight and tomorrow.
So, after Christmas lunch tomorrow, off we go to check him in at the Hospital.
Thanks to everyone for your prayers and best wishes during this holiday season. Everyone has just been wonderful. And, my mom, for watching over Tony from Heaven.
This ice storm has put out many people. Many continue to be without power during these holidays. My heart goes out to them.
God bless you all during these festive holiday times.
Merry Christmas everyone.
Sunday, December 22, 2013
Still waiting
No phone calls all weekend long.
Trust me, all phones are close to us and we are just waiting.
I shall phone PMH in the morning.
Trust me, all phones are close to us and we are just waiting.
I shall phone PMH in the morning.
Friday, December 20, 2013
CT Scan results
We went in yesterday for a blood count check. His platelets were on the low side, but no transfusion.
He did receive the 2 1/2 hour drip with pamidronate, the bone strengthening meds. It was different than when Humber River Hospital administered it. Tony was mobile this time, so we were able to leave the clinic, have lunch and just wander around.
While there I asked the doctor for a copy of the CT Scan report. I just needed to see it for my own eyes and plus I was curious as to the size of the tumors.
I'm going to quote the most exciting read ever!
" There has been near total resolution of the left-sided periaortic mass seen previously, with very minimal soft tissue remaining, as seen on image 80 of series 2, measuring approximately 24mm x 14mm compared to 8.3 cm x 6.4 cm before"
"Also, near total resolution of 8.1cm x 7.6cm soft tissue mass seen previously in the left lower quadrant, with just minimal regional residual stranding"
Need I say more?
Happy Christmas shopping everyone!
Now we wait for that phone call. Luggage is ready and waiting.
He did receive the 2 1/2 hour drip with pamidronate, the bone strengthening meds. It was different than when Humber River Hospital administered it. Tony was mobile this time, so we were able to leave the clinic, have lunch and just wander around.
While there I asked the doctor for a copy of the CT Scan report. I just needed to see it for my own eyes and plus I was curious as to the size of the tumors.
I'm going to quote the most exciting read ever!
" There has been near total resolution of the left-sided periaortic mass seen previously, with very minimal soft tissue remaining, as seen on image 80 of series 2, measuring approximately 24mm x 14mm compared to 8.3 cm x 6.4 cm before"
"Also, near total resolution of 8.1cm x 7.6cm soft tissue mass seen previously in the left lower quadrant, with just minimal regional residual stranding"
Need I say more?
Happy Christmas shopping everyone!
Now we wait for that phone call. Luggage is ready and waiting.
Wednesday, December 18, 2013
Transplant is a go!
Today, at 6:06pm we received an email:
"Much improvement on the scans. Tony is good to go for the transplant as soon as there is a bed. Have his bags packed and be prepared for the phone call."
WOW It's a go!
I cannot believe it. The stress of waiting and waiting for two days for this news was ginormous!
I'm getting a kink in my neck from all the stress. And the Christmas stress too! But, the weight has been lifted.
Tomorrow, he has a scheduled appointment to do a blood count check.
Tomorrow, I will have a bounce to my walk :D
Good night everyone!
Oh, and thank you to Tony's Angel in Heaven. I know she's up there watching over us.
I miss you ma.
"Much improvement on the scans. Tony is good to go for the transplant as soon as there is a bed. Have his bags packed and be prepared for the phone call."
WOW It's a go!
I cannot believe it. The stress of waiting and waiting for two days for this news was ginormous!
I'm getting a kink in my neck from all the stress. And the Christmas stress too! But, the weight has been lifted.
Tomorrow, he has a scheduled appointment to do a blood count check.
Tomorrow, I will have a bounce to my walk :D
Good night everyone!
Oh, and thank you to Tony's Angel in Heaven. I know she's up there watching over us.
I miss you ma.
Tuesday, December 17, 2013
Still waiting on CT scan results....
Very nervous day for me.
No emails or phone calls.
Should hear from them by tomorrow.....Wednesday.
I should have been doing some Christmas shopping today, but just couldn't get my act in gear.
I feel like my Christmas is on hold till we know the next step. I've been a walking zombie all day at home.
Tomorrow cannot come fast enough.
If we don't hear from them by tomorrow, should I phone them?
Tony's next appointment is this Thursday.
Oh goodness.
No emails or phone calls.
Should hear from them by tomorrow.....Wednesday.
I should have been doing some Christmas shopping today, but just couldn't get my act in gear.
I feel like my Christmas is on hold till we know the next step. I've been a walking zombie all day at home.
Tomorrow cannot come fast enough.
If we don't hear from them by tomorrow, should I phone them?
Tony's next appointment is this Thursday.
Oh goodness.
Friday, December 13, 2013
He continues to get better.
Knock on wood.
Tony has had a really good week. He just keeps getting stronger and stronger. He even made three appearances at the office this past week.
His blood counts are good. The best in months and months!
Yesterday's appointment was only a blood count check. We went over what would happen next week.
Oh, and by the way, he will be in a "normal" room for the stem cell transplant throughout his stay. We are prepared to get the phone call to go in as early as Thursday, next week. This all depends on the results of his CT scan this coming Monday. Fingers crossed. We've been close so many times and have come so far for this moment. We are so so so close!
Today we were at Toronto General Hospital. He got his Hickman line put in. Went smoothly. As the numbness wore off, he did feel a bit discomfort. They did say to him, before signing that release form, that 1 person, every 2-3 years, dies due to hickman lines......Ya, ok, I'll sign. OMG! Why do these doctors continue to remind us of these stats, especially before signing and certain procedures. Anyways, about one hour after the procedure, I was able to take a close look at this line and noticed a red stain on his t-shirt. About a 3 inch diameter circle. Luckily, it wasn't getting worse.
We are away for a much needed break from city life this weekend. My dad continues to miss my mom. We all do......We took him away with us to have a change of scenery. Supposed to be quite the snowfall over the next few days. Should be pretty and very cold. It's the calm before the storm right now. Let's see what the coming week shows us.
Stay warm everyone.
Tony has had a really good week. He just keeps getting stronger and stronger. He even made three appearances at the office this past week.
His blood counts are good. The best in months and months!
Yesterday's appointment was only a blood count check. We went over what would happen next week.
Oh, and by the way, he will be in a "normal" room for the stem cell transplant throughout his stay. We are prepared to get the phone call to go in as early as Thursday, next week. This all depends on the results of his CT scan this coming Monday. Fingers crossed. We've been close so many times and have come so far for this moment. We are so so so close!
Today we were at Toronto General Hospital. He got his Hickman line put in. Went smoothly. As the numbness wore off, he did feel a bit discomfort. They did say to him, before signing that release form, that 1 person, every 2-3 years, dies due to hickman lines......Ya, ok, I'll sign. OMG! Why do these doctors continue to remind us of these stats, especially before signing and certain procedures. Anyways, about one hour after the procedure, I was able to take a close look at this line and noticed a red stain on his t-shirt. About a 3 inch diameter circle. Luckily, it wasn't getting worse.
We are away for a much needed break from city life this weekend. My dad continues to miss my mom. We all do......We took him away with us to have a change of scenery. Supposed to be quite the snowfall over the next few days. Should be pretty and very cold. It's the calm before the storm right now. Let's see what the coming week shows us.
Stay warm everyone.
Monday, December 9, 2013
Another blood transfusion
Tony has his appetite back. He even came grocery shopping with me yesterday. The first in many months! But this morning he woke up tired. We had a friend drive him to Princess Margaret today, thinking it would be a fast blood work check up. I needed to be at work. I'm so behind in paperwork for our business. Serious behind! But around noon, he texted saying his hemoglobin dropped to 81 (88 last Thursday). He received two units of blood today. Our friend had somewhere to be mid afternoon, so after work, I picked him up.
His appetite continues to thrive even tonight!
Thursday, we see the oncologist and Friday he gets his picc line removed and they give him a hick man line. Yikes! He needs it for the transplant........
His appetite continues to thrive even tonight!
Thursday, we see the oncologist and Friday he gets his picc line removed and they give him a hick man line. Yikes! He needs it for the transplant........
Friday, December 6, 2013
Sing: It's beginning to look alot like Christmas......Aaaaaaat P.M.H.
Monday's appointment went ok. He needed magnesium. Two hour IV drip. Another long day.
Thursday's appointment was great! He got his blood work done and we found out all was good!!!!
No further blood tweaking with IV drips.
Since our staff company Christmas party was Friday night, we wanted to hear from the doctor whether he was well enough to attend with his immunity. We got the ok from the transplant coordinator. He also shared with us that once they get the results from his CT scan (Dec.16) they will hopefully initiate the transplant. Which means, Tony can get a call shortly afterwards.
Which means, he will be in hospital during the holidays.
Which means, this will be the best Christmas present ever.
Which means, perhaps there's an angel in Heaven watching over us and blessing us with this news.
Awe, life is good again.
Tony, "the boss", attended the company Christmas party tonight. He looked great. Perhaps others may have thought he looked pale and fragile, but in my eyes, he looked great. He had lots to say and lots of smiles. Yes, he felt the need to sit all the time.
Yes, he had no appetite.
Yes, he's lost about 30 pounds since diagnosed.
Yes, but to me he looked great!
I love you Tony.
I'm so proud of the business you've developed.
I'm so proud of our boys stepping up to the plate and hitting that ball out of the park! They have taken over the business. Both customers and employees respect them like they continue to respect you and to root root for you!
Life feels good again.
Thursday's appointment was great! He got his blood work done and we found out all was good!!!!
No further blood tweaking with IV drips.
Since our staff company Christmas party was Friday night, we wanted to hear from the doctor whether he was well enough to attend with his immunity. We got the ok from the transplant coordinator. He also shared with us that once they get the results from his CT scan (Dec.16) they will hopefully initiate the transplant. Which means, Tony can get a call shortly afterwards.
Which means, he will be in hospital during the holidays.
Which means, this will be the best Christmas present ever.
Which means, perhaps there's an angel in Heaven watching over us and blessing us with this news.
Awe, life is good again.
Tony, "the boss", attended the company Christmas party tonight. He looked great. Perhaps others may have thought he looked pale and fragile, but in my eyes, he looked great. He had lots to say and lots of smiles. Yes, he felt the need to sit all the time.
Yes, he had no appetite.
Yes, he's lost about 30 pounds since diagnosed.
Yes, but to me he looked great!
I love you Tony.
I'm so proud of the business you've developed.
I'm so proud of our boys stepping up to the plate and hitting that ball out of the park! They have taken over the business. Both customers and employees respect them like they continue to respect you and to root root for you!
Life feels good again.
Friday, November 29, 2013
I'm getting tired
Another 10 hour day. We left at 10am and got home at 8pm. Good news is we missed rush hour driving to Toronto and back. He got his blood work done and while we waited for the 2pm appointment with oncology, we had lunch at the hospital. Wednesday afternoon, he began feeling tired. All morning on Thursday he walked around the hospital with me. But, after lunch, he was done. I grabbed a wheelchair for him and up we went for our appointment. Sure enough, his hemoglobin was at 80 and they suspect the chemo will continue to effect his numbers and won't be well on the weekend. So, they decided to give him two units of blood. Also, his immunity was at zero. ZERO! The nurse on Monday should NOT have told us to stop with the neupogin injections. OMG. I even questioned her if it was ok with oncology!!! Darn! I really must pay attention to my gut instincts! They gave him an injection right there in the office. Off we went to 4th floor to the unit to get his blood. Poor Tony. He was really tired. Because it was late in the day, the rooms with beds were available. He got a private room with TV and was able to sleep and relax while getting his blood transfusion. (and a reminder again to the nurses re his pre-meds) Is there a medic alert for allergic reactions to blood transfusions? It should be in his file. It should be on his wrist band when they give him one every visit. It should be! Anyone know? Must ask next time.
He got benedryl but no Tylenol. I must say though, those nurses were very attentive to him. Checking up on him. Weird thing was his blood pressure just kept inching higher and higher. But, when done, it was back to normal. Odd
We closed the place down. Last patient to leave the chemo daycare clinic.
Next week we shall see.
He got benedryl but no Tylenol. I must say though, those nurses were very attentive to him. Checking up on him. Weird thing was his blood pressure just kept inching higher and higher. But, when done, it was back to normal. Odd
We closed the place down. Last patient to leave the chemo daycare clinic.
Next week we shall see.
Tuesday, November 26, 2013
The latest
Sorry followers. It's been a difficult period in our lives. I cannot describe my feelings for losing my mom. I will always miss her. I will always wish I asked her about..... I will always miss her advice. I will always miss the smile only a mother can give. Many many things. My dad is having a difficult time, which is understandable. They were married 62 wonderful years. I guess what I keep reminding myself is that she lived a great life. My dad adored her, oh, how he adored her. She had a good life. The funeral viewing was a celebration of life. The mass was angelic. Angelic. We had my brother's choir sing during the mass. They did a wonderful job. I know my mom was watching over us. I know my mom would have been happy with all the decisions we made. I know my mom gave me so much strength these past few days. I tell Tony that he now has an angel watching over him. She cared about him so much. Every day in hospital, she asked how he was doing. Yes, Heaven has an angel watching over my husband.
Tony's chemo round went really well last week. His sister took him on Friday for his PMH day. Yesterday, I took him to PMH and his numbers are good. Hemoglobin was 92. White blood count was good. I began giving him the Neupogin injections on Sunday and yesterday, after two dosages, they said to stop because his numbers are good. Not bad. Still has an appetite. His taste buds are normal. Doesn't have that "metal" mouth taste. No nausea. Lost another 8 lbs. They did give him meds called IVIG. It's an Immune globulin. No one could really explain exactly, but it is a blood bi-product. Thank goodness I asked, because the doctor did not prescribe the pre-meds so he doesn't react like last time. This pre-med consisted of benedryl and Tylenol so he doesn't get the shakes again. Whew.
Next appointment is Thursday for another blood check.
Tony's chemo round went really well last week. His sister took him on Friday for his PMH day. Yesterday, I took him to PMH and his numbers are good. Hemoglobin was 92. White blood count was good. I began giving him the Neupogin injections on Sunday and yesterday, after two dosages, they said to stop because his numbers are good. Not bad. Still has an appetite. His taste buds are normal. Doesn't have that "metal" mouth taste. No nausea. Lost another 8 lbs. They did give him meds called IVIG. It's an Immune globulin. No one could really explain exactly, but it is a blood bi-product. Thank goodness I asked, because the doctor did not prescribe the pre-meds so he doesn't react like last time. This pre-med consisted of benedryl and Tylenol so he doesn't get the shakes again. Whew.
Next appointment is Thursday for another blood check.
Friday, November 22, 2013
Yesterday, a very sad day
Sadly, yesterday at noon, Heaven received an angel. My mom.
It's been a very difficult time for the entire immediate family, as you can only imagine. Tony continues his D-pace chemo treatment. Today he gets disconnected. We have been relying on family and friends to tend to all of Tony's needs. We never leave him alone. He is actually doing good, considering. There are no obvious signs of a cold or anything. (knock on wood!)
More later as we have a very difficult couple of days.
Hugs,
Mary
It's been a very difficult time for the entire immediate family, as you can only imagine. Tony continues his D-pace chemo treatment. Today he gets disconnected. We have been relying on family and friends to tend to all of Tony's needs. We never leave him alone. He is actually doing good, considering. There are no obvious signs of a cold or anything. (knock on wood!)
More later as we have a very difficult couple of days.
Hugs,
Mary
Wednesday, November 20, 2013
What a week.
All I can say is what a week. My brain simply cannot plan beyond 24 hours. It's a stupid brain. My sister-in-law and brother are in the same boat. The simplest of tasks take forever to plan. My mom's condition continues to get worse. This morning she was moved to palliative care within the hospital. A beautiful section. Scenic views. Common kitchen area. Private building compared to the hustle of the main hospital. Quiet too....you don't hear the beeps of the IV's from other patients like a hospital room. You don't hear people talking loudly and dealing with all the commotion of a patients floor. This is so peaceful.
Not sure how much time left. Not sure where this courage to deal with this is coming from. We never leave my husband, my dad or my mom alone now. Planning and scheduling of everyone's life to fit this becomes challenging with "stupid" brains. We laugh, we cry, we hug and we pray My parents are blessed with five grandchildren who love them tremendously. My nephew is flying home to visit his grandmother. I hope he makes it. Her longest conscious moment was when her priest visited to pray with us. Before he left, Father Domenico said goodbye and she opened her eyes and said, "ti ringrazio". (I thank you)
And my other patient, my husband, the one that this blog is all about, has been put second on my priority list. Poor Tony. Planning to have someone with him 24/7 has been ok so far. As I type, he has completed 57 hours of 96 of chemo. Over the half way mark. Today, he is feeling the effects. He has begun to have weak legs and periods of dizziness when he bends or gets up. Although he's back on the steroids, he sleeps during the night. Thank goodness. So far, no other signs of infections, fevers, colds or pneumonia. He gets disconnected this Friday at 3:15pm
Still need much strength for the entire family as we continue this difficult week. Your texts, emails and phone calls are so reassuring. We thank everyone for being there for us for meals, babysitting and support.
From my family to yours, God bless you all.
Not sure how much time left. Not sure where this courage to deal with this is coming from. We never leave my husband, my dad or my mom alone now. Planning and scheduling of everyone's life to fit this becomes challenging with "stupid" brains. We laugh, we cry, we hug and we pray My parents are blessed with five grandchildren who love them tremendously. My nephew is flying home to visit his grandmother. I hope he makes it. Her longest conscious moment was when her priest visited to pray with us. Before he left, Father Domenico said goodbye and she opened her eyes and said, "ti ringrazio". (I thank you)
And my other patient, my husband, the one that this blog is all about, has been put second on my priority list. Poor Tony. Planning to have someone with him 24/7 has been ok so far. As I type, he has completed 57 hours of 96 of chemo. Over the half way mark. Today, he is feeling the effects. He has begun to have weak legs and periods of dizziness when he bends or gets up. Although he's back on the steroids, he sleeps during the night. Thank goodness. So far, no other signs of infections, fevers, colds or pneumonia. He gets disconnected this Friday at 3:15pm
Still need much strength for the entire family as we continue this difficult week. Your texts, emails and phone calls are so reassuring. We thank everyone for being there for us for meals, babysitting and support.
From my family to yours, God bless you all.
Tuesday, November 19, 2013
Here we go again with Dpace
Day one of Dpace Chemo treatment.
My day yesterday began with "the phone call" at 1:35am from my mom's doctor saying she was getting progressively worse since I left her the night before at 9:30pm. Not a good feeling when you get that call in the early hours. I alerted my sister-in-law who alerted my brother. Not a good feeling, either, when your brother is out of town. The sense of helplessness and not having that family member close by for support and help in decision making stuff is even worse. (he had to end his trip early to come home-my heart ached as he did need this much needed time away) My drive down to Sunnybrook was a lonely anxious one.
A very tough day ahead of me.
I stayed with my mom with my sister-in-law by my side. My parents have two children. But my dad always says he has four. They (my husband and sister-in-law) have always been treated like family as far as my parents go.
Yesterday, I witnessed the very bad side of cancer.
Yesterday, serious decisions had to be made.
Yesterday, was Tony's first day of Dpace.
I had to figure out a way to get him downtown to his appointment. Who can I call at 5am to make this decision? ( I did think of you Rosemary) He had to be downtown by 9am. For those that know all these locations, you know that I had a lot of driving to do. I left my mom to pick up Tony at home and while he drove downtown, I caught some zzzzs. His sister (who he says spoiled and treated him better than I do-hahahaha) met us at the hospital and was with him all day long. I'm grateful that she was able to take the day off from her busy work schedule and take over this part of my "to do" today. This was my first appointment at PMH that I was not there for my husband. I knew he was in great hands. She's a great advocate. Things went well. He did his blood work. I think he said his hemoglobin was 89? can't remember. Between him and my mom these numbers are getting confusing in my brain. The samples they took last week came back negative so he was good to go for chemo. He was at PMH at 9am and they didn't leave downtown till 3pm. Long day for everyone. Thank you, Paola, for the groceries and cooking dinner for Tony and Robert. Could it be the steroids in his "cocktail" of chemo that made him eat a "delicious" dinner"? (his exact words, Paola) No, she's a great cook. Nothing better than meat and potatoes. Paola's potatoes. They are the best!
I left my mom around 7:30pm to come home. At this point we are doing shifts to stay with her 24/7. It's been rough as my sister-in-law, brother and myself haven't slept in over 36 hours.
I always say to save your tears for the drive home. Well, it was an emotional drive home. I called my best friend, my husband, and vented. It wasn't till I heard his sadness over my blue tooth, that I realised, he has cancer too. I need to be sensitive and watch my choice of words next time. I know his sadness was because he felt bad for my mom and for us dealing with this. but.............not going to say it.................
our new "normal" life is about to change, again.
Tears are rolling down my face as I type this blog... ...keep us in your prayers for strength during this difficult time.
My day yesterday began with "the phone call" at 1:35am from my mom's doctor saying she was getting progressively worse since I left her the night before at 9:30pm. Not a good feeling when you get that call in the early hours. I alerted my sister-in-law who alerted my brother. Not a good feeling, either, when your brother is out of town. The sense of helplessness and not having that family member close by for support and help in decision making stuff is even worse. (he had to end his trip early to come home-my heart ached as he did need this much needed time away) My drive down to Sunnybrook was a lonely anxious one.
A very tough day ahead of me.
I stayed with my mom with my sister-in-law by my side. My parents have two children. But my dad always says he has four. They (my husband and sister-in-law) have always been treated like family as far as my parents go.
Yesterday, I witnessed the very bad side of cancer.
Yesterday, serious decisions had to be made.
Yesterday, was Tony's first day of Dpace.
I had to figure out a way to get him downtown to his appointment. Who can I call at 5am to make this decision? ( I did think of you Rosemary) He had to be downtown by 9am. For those that know all these locations, you know that I had a lot of driving to do. I left my mom to pick up Tony at home and while he drove downtown, I caught some zzzzs. His sister (who he says spoiled and treated him better than I do-hahahaha) met us at the hospital and was with him all day long. I'm grateful that she was able to take the day off from her busy work schedule and take over this part of my "to do" today. This was my first appointment at PMH that I was not there for my husband. I knew he was in great hands. She's a great advocate. Things went well. He did his blood work. I think he said his hemoglobin was 89? can't remember. Between him and my mom these numbers are getting confusing in my brain. The samples they took last week came back negative so he was good to go for chemo. He was at PMH at 9am and they didn't leave downtown till 3pm. Long day for everyone. Thank you, Paola, for the groceries and cooking dinner for Tony and Robert. Could it be the steroids in his "cocktail" of chemo that made him eat a "delicious" dinner"? (his exact words, Paola) No, she's a great cook. Nothing better than meat and potatoes. Paola's potatoes. They are the best!
I left my mom around 7:30pm to come home. At this point we are doing shifts to stay with her 24/7. It's been rough as my sister-in-law, brother and myself haven't slept in over 36 hours.
I always say to save your tears for the drive home. Well, it was an emotional drive home. I called my best friend, my husband, and vented. It wasn't till I heard his sadness over my blue tooth, that I realised, he has cancer too. I need to be sensitive and watch my choice of words next time. I know his sadness was because he felt bad for my mom and for us dealing with this. but.............not going to say it.................
our new "normal" life is about to change, again.
Tears are rolling down my face as I type this blog... ...keep us in your prayers for strength during this difficult time.
Thursday, November 14, 2013
Looks like a go for this Monday!
Today, we went to Princess Margaret Hospital for a visit to see if Tony's blood work was good to go to begin his 2nd round of Dpace Chemo.
Hemoglobin improved by 2 points over the past 7 days. Still good.
White cell count was good, along with all his other numbers.
Last Friday he began his once a week shot of Eprex, to stimulate his hemoglobin counts. We are not 100% sure, but either the after effects of the Neupogen or Eprex, has given him pain in one knee, one elbow, one wrist, one ankle and one toe.....Doesn't feel like gout. Could be bone pain from the needles I just mentioned. Odd that it's all joint areas. His knee was the most obvious with swelling and very warm to the touch.
He's also developed a very runny nose. They took a nose and phlegm sample for testing. In the meantime, they have given him antibiotics. They requested an x-ray of his chest as well. (results are negative)
We had a new doctor visit with him today instead of Dr. C. He listened to his lungs and felt for the tumors in his abdominal area and cannot feel anything there. Perhaps he wasn't pressing enough? Oh, never mind because we are going with he didn't feel anything.
Andrew, the Stem Cell Transplant Coordinator says things look great to begin this Monday with his 4 day cycle once again. I'm glad and sad. It's been an awesome 7 days with no doctors, appetite is back and his good old "Tony attitude" is back too. Oh well. He can do this again! He can! Me too!
Oh, and a CT scan has been booked for mid December to see how those tumors are doing and then he should be ready for Transplant!
Transplant? Can it be? A wonderful Christmas gift for Tony?
I believe!
Update on my mom:
Yesterday, she had a biopsy done to help determine the type of cancer she has.
We are looking for a full time live in caregiver. (message me if anyone knows of anyone available)
She gets released in a couple of days and Tony begins chemo on Monday.
It's going to be a challenging few weeks for our family.
Continue to keep us in your prayers.
May God bless you all.
Hemoglobin improved by 2 points over the past 7 days. Still good.
White cell count was good, along with all his other numbers.
Last Friday he began his once a week shot of Eprex, to stimulate his hemoglobin counts. We are not 100% sure, but either the after effects of the Neupogen or Eprex, has given him pain in one knee, one elbow, one wrist, one ankle and one toe.....Doesn't feel like gout. Could be bone pain from the needles I just mentioned. Odd that it's all joint areas. His knee was the most obvious with swelling and very warm to the touch.
He's also developed a very runny nose. They took a nose and phlegm sample for testing. In the meantime, they have given him antibiotics. They requested an x-ray of his chest as well. (results are negative)
We had a new doctor visit with him today instead of Dr. C. He listened to his lungs and felt for the tumors in his abdominal area and cannot feel anything there. Perhaps he wasn't pressing enough? Oh, never mind because we are going with he didn't feel anything.
Andrew, the Stem Cell Transplant Coordinator says things look great to begin this Monday with his 4 day cycle once again. I'm glad and sad. It's been an awesome 7 days with no doctors, appetite is back and his good old "Tony attitude" is back too. Oh well. He can do this again! He can! Me too!
Oh, and a CT scan has been booked for mid December to see how those tumors are doing and then he should be ready for Transplant!
Transplant? Can it be? A wonderful Christmas gift for Tony?
I believe!
Update on my mom:
Yesterday, she had a biopsy done to help determine the type of cancer she has.
We are looking for a full time live in caregiver. (message me if anyone knows of anyone available)
She gets released in a couple of days and Tony begins chemo on Monday.
It's going to be a challenging few weeks for our family.
Continue to keep us in your prayers.
May God bless you all.
Friday, November 8, 2013
Follow Up appointment
We had an appointment with the oncologist yesterday to basically follow up with what the next step is and results on blood work.
Good news is no doctor appointments and medication for 7 days!!!
They are hoping to do the second cycle of Dpace chemo on November 18. It will depend on his blood counts and health. Otherwise, it will be on November 25.
Tony has been suffering from a sore throat and runny nose. He has woken me up at 5am twice now to get him a tea with honey and lemon to sooth. It's been burning him. Poor Tony. The doctor took a swab of his throat for testing.
The blood work taken about two weeks ago did show an infection. She was right! However, the ones taken after his episode of shakes on Monday, were negative. So that means the antibiotics he's on are working.
She did a physical exam of him and commented on how much the tumors have shrunk. She feels lots of bloating, but the tumors have gotten smaller.
Once this second round of chemo is done, she will order a CT scan and all she needs to see is a 50% reduction and then they will do two back to back transplants. (keep in mind she did say before this that he may need 3-4 rounds)
Overall, yesterday's appointment was a "feel good" appointment. She commented on how good he looks!
Since being diagnosed last year, he has lost 30 pounds.
Oh, I'm wrong.....he does need medication....she ordered Eprex to help with his hemoglobin levels. We should have gotten the prescription filled at the hospital, but I forgot. Our neighbourhood pharmacy has to order it in. It will be one injection weekly for four weeks and reassess at that time. I need to go get it as I forgot on my way home.....back outside I go. Darn! My mind has been so foggy lately. I wonder why?!
Until Thursday......Unless, something else happens by then.
Good news is no doctor appointments and medication for 7 days!!!
They are hoping to do the second cycle of Dpace chemo on November 18. It will depend on his blood counts and health. Otherwise, it will be on November 25.
Tony has been suffering from a sore throat and runny nose. He has woken me up at 5am twice now to get him a tea with honey and lemon to sooth. It's been burning him. Poor Tony. The doctor took a swab of his throat for testing.
The blood work taken about two weeks ago did show an infection. She was right! However, the ones taken after his episode of shakes on Monday, were negative. So that means the antibiotics he's on are working.
She did a physical exam of him and commented on how much the tumors have shrunk. She feels lots of bloating, but the tumors have gotten smaller.
Once this second round of chemo is done, she will order a CT scan and all she needs to see is a 50% reduction and then they will do two back to back transplants. (keep in mind she did say before this that he may need 3-4 rounds)
Overall, yesterday's appointment was a "feel good" appointment. She commented on how good he looks!
Since being diagnosed last year, he has lost 30 pounds.
Oh, I'm wrong.....he does need medication....she ordered Eprex to help with his hemoglobin levels. We should have gotten the prescription filled at the hospital, but I forgot. Our neighbourhood pharmacy has to order it in. It will be one injection weekly for four weeks and reassess at that time. I need to go get it as I forgot on my way home.....back outside I go. Darn! My mind has been so foggy lately. I wonder why?!
Until Thursday......Unless, something else happens by then.
Tuesday, November 5, 2013
He did it! He's harvested!
WHOA! A very very very early morning. Due to steroids from yesterday, Tony was wired all night. Didn't sleep much. I'm sure the excitement of today was part of it. Me? I was soooo exhausted, that I did sleep.
Up at 5am.
At Toronto General Hospital before 7am.
They first collected some blood for testing to see how many cells he had and confirm that it would be enough to collect for the machine to do it's job.
Then we reported to the actual clinic where it's performed. Second Floor. I pushed him with a wheelchair. Too much walking inside the hospital. Can't blame him. He was tired. Once there, they confirmed it was a go. Blood work was good.
While waiting for his special chair, we met a couple. The husband was donating. Fifteen years ago, he put his name down on a registry for a donation. Fifteen years later, he got the call. Someone in the world needed his stem cells. We thanked him for his selfless donation. Truly, lots of great people out there. The gentlemen sharing the room with Tony was a perfect match for his brother who has a very rare aggressive type of leukemia. He was donating for his brother. Warmed my heart.
I wish I knew how to post pictures on this blog! This room had two chairs, two machines and two technicians. Each patient had their own technician taking care of them. They had one IV line in his right arm taking the blood. It went through all the tubing and into the machine which filtered out his plasma in one bag and his stem cells in another. When completed it went to his left arm with another IV line and given back to him. At any given time he was missing less than half a cup of blood. As Tony said "I am one with this machine". Very cool to watch. Science has come such a long way. His technician was wonderful. Obviously loved her job. Tony mentioned that he remembered reading an article about Stem Cell Collection in Readers' Digest. Who would have thought that he would be part of this incredible miracle.
He was connected at 10:15am and done by 1:15pm. Three hours. Enough was collected for two transplants. We had to wait an hour for them to retest the collection before we could go home. During the procedure, Tony's sister visited and then while waiting for the final news, my brother visited. It actually made the day go faster and the support from everyone via texts throughout the day was great.
Got home at 5:30pm. Another long day. A good day.
Our evening ended with both our boys having dinner at our home with us. So proud of both of them!
Our next appointment is Thursday, with Dr. C. I guess we find out the next step.
We suspect he will need more D-pace chemo treatments to shrink those tumors in abdominal area. Once those are gone, the next step is transplant. Still have a battle, but he can do this! I know he can!
Keep those prayers and positive energy coming our way. So far, it's working everyone!
God bless Tony
Hugs to everyone!
Up at 5am.
At Toronto General Hospital before 7am.
They first collected some blood for testing to see how many cells he had and confirm that it would be enough to collect for the machine to do it's job.
Then we reported to the actual clinic where it's performed. Second Floor. I pushed him with a wheelchair. Too much walking inside the hospital. Can't blame him. He was tired. Once there, they confirmed it was a go. Blood work was good.
While waiting for his special chair, we met a couple. The husband was donating. Fifteen years ago, he put his name down on a registry for a donation. Fifteen years later, he got the call. Someone in the world needed his stem cells. We thanked him for his selfless donation. Truly, lots of great people out there. The gentlemen sharing the room with Tony was a perfect match for his brother who has a very rare aggressive type of leukemia. He was donating for his brother. Warmed my heart.
I wish I knew how to post pictures on this blog! This room had two chairs, two machines and two technicians. Each patient had their own technician taking care of them. They had one IV line in his right arm taking the blood. It went through all the tubing and into the machine which filtered out his plasma in one bag and his stem cells in another. When completed it went to his left arm with another IV line and given back to him. At any given time he was missing less than half a cup of blood. As Tony said "I am one with this machine". Very cool to watch. Science has come such a long way. His technician was wonderful. Obviously loved her job. Tony mentioned that he remembered reading an article about Stem Cell Collection in Readers' Digest. Who would have thought that he would be part of this incredible miracle.
He was connected at 10:15am and done by 1:15pm. Three hours. Enough was collected for two transplants. We had to wait an hour for them to retest the collection before we could go home. During the procedure, Tony's sister visited and then while waiting for the final news, my brother visited. It actually made the day go faster and the support from everyone via texts throughout the day was great.
Got home at 5:30pm. Another long day. A good day.
Our evening ended with both our boys having dinner at our home with us. So proud of both of them!
Our next appointment is Thursday, with Dr. C. I guess we find out the next step.
We suspect he will need more D-pace chemo treatments to shrink those tumors in abdominal area. Once those are gone, the next step is transplant. Still have a battle, but he can do this! I know he can!
Keep those prayers and positive energy coming our way. So far, it's working everyone!
God bless Tony
Hugs to everyone!
Monday, November 4, 2013
One more sleep to harvesting
Another roller coaster day today. Very emotional, right up to typing this blog.
Last night and into this morning, Tony has been experiencing what he calls "throbbing pain" in his back. He is mobile, but when he lies down, it hurts him. He was back on the breakthrough medication every two hours to cope with the pain. But today by late afternoon, it went away.
Our day started at 9am with blood work. Tony walked to his clinic within the hospital. No wheelchair today. After an hour the results showed his hemoglobin was 74. They ordered up two units of blood for a transfusion. They also said he needed magnesium and his antibiotics. The nurse would give his neupogen needle as well. Around 1pm they were finally ready for him. We had a seat by huge windows. Very cold. So cold that I kept my coat on the entire time. As soon as Tony was hooked up, he wanted a blanket because he felt the cold. Understandable. After 2 hours, he said he was chilled. Started to shake a bit. I got another blanket from the warmer. Toasty warm. Still shaking. Getting worse actually. Just like when he got the shakes back in August. I alerted the nurse and right away their response was he's reacting to the blood. Usually, if you're going to react, it would be within 15-20 minutes. We were at over 2 hours into receiving the donated blood. They stopped all IV fluids. Nurse practitioner ordered steroids to combat the reaction. Tony's breathing was ok. Arm shaking so bad that they couldn't get a read on his blood pressure. Oxygen was ok. No fever. He was in a room with 6 patients receiving chemo. All looking at us. Concerned. Reassuring me. The entire chair (recliner) was tremendously shaking. The nurse asked if he could walk to a bed. "I don't think so!!!". The chair was on wheels and 3 nurses quickly pushed him with all his attachments to a private room. At this point, I began to panic. Really, though thinking about it, he was in a very safe place, receiving very good care. But, my thought process at this point was that I felt helpless and that harvesting his cells this week would be off the table......This has been his third shaking episode. Twice now during blood transfusions. The nurses had him covered in heated blankets from head to toe. They wanted him to get a fever so the shakes would stop. Warm blankets and steroids worked. This episode lasted about 30 minutes. By the time it ended, he was exhausted. The nurses told him he would feel like he ran the marathon after this episode. Very tired. And sure enough, he closed his eyes and rested.
Meanwhile, I contacted the stem cell transplant coordinator to get some answers and reassurance. He came through for us. Harvesting is still on for Tuesday. The count for collection must be around the 10 mark and he had 120. Excellent!
Meanwhile, the nurses quickly had viles ready for cultures for testing. They took one sample from his picc line (two ports) one from each line and a third sample from a needle in his other arm. They need to find out the source of this. I forgot to mention that this morning, both picc lines were not working properly. One was completely clogged and the other had a very slow run. This morning, they had difficulty flushing the lines. Before transfusion, they fixed it and got both working. They are ruling out bacteria in the lines that may have caused the shakes and/or reaction to the blood.
Once all under control, Tony fell asleep while they reconnected the magnesium to the IV. We left Princess Margaret Hospital at 6:45pm.....Long Day!
Update on my mom:
My drive home was a phone call with bad news. She has cancer. 84 years old. After days of testing and poking, they still don't know the source of the cancer, but it doesn't look good :(
One day at a time......
Last night and into this morning, Tony has been experiencing what he calls "throbbing pain" in his back. He is mobile, but when he lies down, it hurts him. He was back on the breakthrough medication every two hours to cope with the pain. But today by late afternoon, it went away.
Our day started at 9am with blood work. Tony walked to his clinic within the hospital. No wheelchair today. After an hour the results showed his hemoglobin was 74. They ordered up two units of blood for a transfusion. They also said he needed magnesium and his antibiotics. The nurse would give his neupogen needle as well. Around 1pm they were finally ready for him. We had a seat by huge windows. Very cold. So cold that I kept my coat on the entire time. As soon as Tony was hooked up, he wanted a blanket because he felt the cold. Understandable. After 2 hours, he said he was chilled. Started to shake a bit. I got another blanket from the warmer. Toasty warm. Still shaking. Getting worse actually. Just like when he got the shakes back in August. I alerted the nurse and right away their response was he's reacting to the blood. Usually, if you're going to react, it would be within 15-20 minutes. We were at over 2 hours into receiving the donated blood. They stopped all IV fluids. Nurse practitioner ordered steroids to combat the reaction. Tony's breathing was ok. Arm shaking so bad that they couldn't get a read on his blood pressure. Oxygen was ok. No fever. He was in a room with 6 patients receiving chemo. All looking at us. Concerned. Reassuring me. The entire chair (recliner) was tremendously shaking. The nurse asked if he could walk to a bed. "I don't think so!!!". The chair was on wheels and 3 nurses quickly pushed him with all his attachments to a private room. At this point, I began to panic. Really, though thinking about it, he was in a very safe place, receiving very good care. But, my thought process at this point was that I felt helpless and that harvesting his cells this week would be off the table......This has been his third shaking episode. Twice now during blood transfusions. The nurses had him covered in heated blankets from head to toe. They wanted him to get a fever so the shakes would stop. Warm blankets and steroids worked. This episode lasted about 30 minutes. By the time it ended, he was exhausted. The nurses told him he would feel like he ran the marathon after this episode. Very tired. And sure enough, he closed his eyes and rested.
Meanwhile, I contacted the stem cell transplant coordinator to get some answers and reassurance. He came through for us. Harvesting is still on for Tuesday. The count for collection must be around the 10 mark and he had 120. Excellent!
Meanwhile, the nurses quickly had viles ready for cultures for testing. They took one sample from his picc line (two ports) one from each line and a third sample from a needle in his other arm. They need to find out the source of this. I forgot to mention that this morning, both picc lines were not working properly. One was completely clogged and the other had a very slow run. This morning, they had difficulty flushing the lines. Before transfusion, they fixed it and got both working. They are ruling out bacteria in the lines that may have caused the shakes and/or reaction to the blood.
Once all under control, Tony fell asleep while they reconnected the magnesium to the IV. We left Princess Margaret Hospital at 6:45pm.....Long Day!
Update on my mom:
My drive home was a phone call with bad news. She has cancer. 84 years old. After days of testing and poking, they still don't know the source of the cancer, but it doesn't look good :(
One day at a time......
Saturday, November 2, 2013
Phone call from PMH
Friday at 10:15am, I received a call from the stem cell transplant coordinator.
Blood work showed an infection and Tony needed to go to his nearest hospital or go downtown to him.
Well, that was a no brainer! I quickly got us ready, packed some snacks and meds, just in case it would be a very long day. We drove to PMH and got there at 11:45am. Record time as it was not rush hour.
They still didn't have the full culture results in yet, but began antibiotics and Saturday/Sunday, they would know more about the infection. Still no fevers. Took Tony's vital signs and all ok. Actually, his blood pressure was getting better. He has stopped his blood pressure pills entirely.
We left the hospital around 3:30 and home care will be visiting to administer the IV antibiotics during the weekend.
Good news is that harvesting his cells is still a yes for Wednesday.
Keep those prayers going that he produces enough of those "things" for stem cell harvesting!
Enjoy the weekend everyone!
Update on my mom:
She is still in hospital. We do not have a firm confirmation as to what is still going on with her. Lots of tests and questions. Hopefully, this Monday, they will be in a position to tell us more.
Blood work showed an infection and Tony needed to go to his nearest hospital or go downtown to him.
Well, that was a no brainer! I quickly got us ready, packed some snacks and meds, just in case it would be a very long day. We drove to PMH and got there at 11:45am. Record time as it was not rush hour.
They still didn't have the full culture results in yet, but began antibiotics and Saturday/Sunday, they would know more about the infection. Still no fevers. Took Tony's vital signs and all ok. Actually, his blood pressure was getting better. He has stopped his blood pressure pills entirely.
We left the hospital around 3:30 and home care will be visiting to administer the IV antibiotics during the weekend.
Good news is that harvesting his cells is still a yes for Wednesday.
Keep those prayers going that he produces enough of those "things" for stem cell harvesting!
Enjoy the weekend everyone!
Update on my mom:
She is still in hospital. We do not have a firm confirmation as to what is still going on with her. Lots of tests and questions. Hopefully, this Monday, they will be in a position to tell us more.
Thursday, October 31, 2013
Can it be? Six more sleeps to harvesting?
What we thought would be a QUICK day, ended up being VERY long.
Firstly, the drive downtown took 2 hours. It was raining and it's Halloween.
The clinics, for some reason, weren't too busy. Some staff members were dressed up in costumes which was fun.
We were seen by a new doctor today.
Blood Pressure: Very low (can't remember! 97 over something)
Tiredness levels: Very tired
Appetite: None
Fluid intake: good
Dizziness: When he gets up
Hemoglobin 106
WBC 0.3 (we have named them Curly, Larry & Moe) He has no immunity. Warned to have minimal contact with anyone. No visitors.
Creatinine 68 - WOW Very good.
Lungs were good
Acid - still bothering him
Afterwards, his oncologist came in to review everything. Remembers that his bikini line tumor was visible from across the room and noticed how much it shrunk. Can't feel the lymph node under his arm. She can still feel the abdominal area ones. Feels that a CT scan not necessary at this time. She can feel them, they are still there. Between the new doctor and his oncologist, they all think that his low blood pressure could be an underlying infection. Even though he has no fever. She felt she needed to rule this out and ordered more blood work and urine sample for cultures. Tony thinks it's because of his weight loss. The other thing to is that he's on high blood pressure pills (2 types) so she said to stop taking them and I'm supposed to check his blood pressure twice daily. Could also be dehydration. His magnesium was low too. They feel that he should stop taking Zantac for acid and put him on a prescribed pill to work better with his acid.
She ordered a magnesium, platelets and saline via IV. Another 2 hours of sitting. But, this room was not busy. Another clinic. Tony got a bed and I got a recliner. Nice! I love PMH!
Took us 2.75 hours to get home. LONG DRIVE.
Monday they are doing more blood work and may give him "stuff" if necessary, to boost levels, if needed. His neupogin takes a few days to kick in and he's only had 4 days worth. He's on it for 10 days. I'm grateful that home care is doing the injections.
And........Wednesday we go to Toronto General Hospital for blood work and then harvesting!!!!!
Fourth time we have an appointment set up for harvesting this year.
It will happen this time. I feel it. Need to keep Tony healthy. Need to stimulate those taste buds. Need him to eat anything. Today he has survived on sips of ginger ale, half a coconut donut, three bites of a meat sandwich, water, half a bottle of vitamin water, three bites of apple pie, half a Popsicle. And, don't think I've offered him good stuff. I had my bag of goodies with me all day. Plus, being Halloween, not one candy. Not one. Today, was a bad day. Food just doesn't appeal to him at all. Even his favourites. I'm struggling with this. Hopefully, after his IV meds from today he will feel better in the morning.
Another day.
Nite all.
Firstly, the drive downtown took 2 hours. It was raining and it's Halloween.
The clinics, for some reason, weren't too busy. Some staff members were dressed up in costumes which was fun.
We were seen by a new doctor today.
Blood Pressure: Very low (can't remember! 97 over something)
Tiredness levels: Very tired
Appetite: None
Fluid intake: good
Dizziness: When he gets up
Hemoglobin 106
WBC 0.3 (we have named them Curly, Larry & Moe) He has no immunity. Warned to have minimal contact with anyone. No visitors.
Creatinine 68 - WOW Very good.
Lungs were good
Acid - still bothering him
Afterwards, his oncologist came in to review everything. Remembers that his bikini line tumor was visible from across the room and noticed how much it shrunk. Can't feel the lymph node under his arm. She can still feel the abdominal area ones. Feels that a CT scan not necessary at this time. She can feel them, they are still there. Between the new doctor and his oncologist, they all think that his low blood pressure could be an underlying infection. Even though he has no fever. She felt she needed to rule this out and ordered more blood work and urine sample for cultures. Tony thinks it's because of his weight loss. The other thing to is that he's on high blood pressure pills (2 types) so she said to stop taking them and I'm supposed to check his blood pressure twice daily. Could also be dehydration. His magnesium was low too. They feel that he should stop taking Zantac for acid and put him on a prescribed pill to work better with his acid.
She ordered a magnesium, platelets and saline via IV. Another 2 hours of sitting. But, this room was not busy. Another clinic. Tony got a bed and I got a recliner. Nice! I love PMH!
Took us 2.75 hours to get home. LONG DRIVE.
Monday they are doing more blood work and may give him "stuff" if necessary, to boost levels, if needed. His neupogin takes a few days to kick in and he's only had 4 days worth. He's on it for 10 days. I'm grateful that home care is doing the injections.
And........Wednesday we go to Toronto General Hospital for blood work and then harvesting!!!!!
Fourth time we have an appointment set up for harvesting this year.
It will happen this time. I feel it. Need to keep Tony healthy. Need to stimulate those taste buds. Need him to eat anything. Today he has survived on sips of ginger ale, half a coconut donut, three bites of a meat sandwich, water, half a bottle of vitamin water, three bites of apple pie, half a Popsicle. And, don't think I've offered him good stuff. I had my bag of goodies with me all day. Plus, being Halloween, not one candy. Not one. Today, was a bad day. Food just doesn't appeal to him at all. Even his favourites. I'm struggling with this. Hopefully, after his IV meds from today he will feel better in the morning.
Another day.
Nite all.
Wednesday, October 30, 2013
One year anniversary
ONE YEAR AGO TODAY, TONY WAS DIAGNOSED.
He has been knowingly battling this horrible disease for 365 days.
He has had many ups and downs and ups.
He has exhausted a few oral chemo drugs to keep this under control.
He has had too many to count x-rays, CT scans, ultra sounds, radiation treatments, biopsy, needles, blood transfusions, blood taken, bone marrow tests, ambulance rides, emergency visits, hospital stays, sweats, constipation......blah blah blah. I'm sure I'm forgetting stuff!
He has had countless appointments with specialists: oncologists, urologists, radiologists, hospitalists, pain management, gastro, dental, etc.
We have learned lots.
Cannot believe we are days away, again, from harvesting his stem cells. DAYS!
After all of this, one year later, tonight, he is weak, exhausted, his back hurts & zero appetite.
It's been rough, but we, his family, are keeping things normal.
Keeping the faith.
Staying positive.
Laughing with him.
As of today, this last round of chemo has visibly deteriorated his tumor on his bikini line by 90%.
Amazing.
He can do this.
He can do this.
Tomorrow is a Princess Margaret Hospital Day. Must be downtown for 8:10AM Yikes, that's early!
They are doing a blood work count check. I need to write down what they're looking for. It's white cell count and something else.
I need to remember to ask about his M-protein number!!! These tumors have taken over and that's all we are concerned about, but I'm curious about how his myeloma is doing......Must remember to ask for that number. Must remember.
He has been knowingly battling this horrible disease for 365 days.
He has had many ups and downs and ups.
He has exhausted a few oral chemo drugs to keep this under control.
He has had too many to count x-rays, CT scans, ultra sounds, radiation treatments, biopsy, needles, blood transfusions, blood taken, bone marrow tests, ambulance rides, emergency visits, hospital stays, sweats, constipation......blah blah blah. I'm sure I'm forgetting stuff!
He has had countless appointments with specialists: oncologists, urologists, radiologists, hospitalists, pain management, gastro, dental, etc.
We have learned lots.
Cannot believe we are days away, again, from harvesting his stem cells. DAYS!
After all of this, one year later, tonight, he is weak, exhausted, his back hurts & zero appetite.
It's been rough, but we, his family, are keeping things normal.
Keeping the faith.
Staying positive.
Laughing with him.
As of today, this last round of chemo has visibly deteriorated his tumor on his bikini line by 90%.
Amazing.
He can do this.
He can do this.
Tomorrow is a Princess Margaret Hospital Day. Must be downtown for 8:10AM Yikes, that's early!
They are doing a blood work count check. I need to write down what they're looking for. It's white cell count and something else.
I need to remember to ask about his M-protein number!!! These tumors have taken over and that's all we are concerned about, but I'm curious about how his myeloma is doing......Must remember to ask for that number. Must remember.
Monday, October 28, 2013
Blood work check up
Another 12 hour day. We left the house at 7am and got home minutes before 7pm. We are exhausted!
Our day began with Tony extremely tired and weak. We both walked into the clinic believing his hemoglobin was still low and expecting a third blood transfusion. Blood was lost somewhere between delivery and it took 3 hours to get the results! (usually takes 1 hour) Tony went from wheelchair to a couch in the waiting room and used our cooler bag with treats as a pillow. He fell asleep and didn't realize the time passing. When they finally got the results, they called us in and her first words were "your blood work is great. No transfusion necessary". Of course, we didn't believe her. I asked for a printout and it said 112 for hemoglobin. I don't understand. If my memory is right, I think it hasn't been that high since February/March, I think. Anyways, it's good news! He received his first Neupogin injection and off we went. We had an hour or so to kill before his next appointment and visited his mom for a late lunch. He was not hungry. He was not cooperating with food or drinking today, but he did get more than I thought he would. Probably to make his mom feel better, but I don't care. He ate a bit! I can see him getting much skinnier by the day since Chemo began. It's normal. It's expected. I don't like this part.
At 3:30 we waited for his urology follow up appointment. She was running behind. The theme of the day. Wait - wait - wait - and, wait.
We learned that his nephrostomy tubes can stay in till April 2014. At that point they would need to be replaced.
We learned that it's ok to periodically have redness in his urine. (Whew)
Good news:
Over the weekend we both noticed that his tumor by the bikini line has shrunk 40% - 50% for sure.
Today, his stomach looks less swollen.
Are these buggers all shrinking? Looks like.
Thursday, we are back at Princess Margaret for a follow up appointment. I hope they measure the tumors again to see the difference.
AND, then one week today, they will be checking to see if his white blood cells, etc are good enough to harvest! We are 7-14 days away from harvesting. Cannot believe we are this close again.
Our day began with Tony extremely tired and weak. We both walked into the clinic believing his hemoglobin was still low and expecting a third blood transfusion. Blood was lost somewhere between delivery and it took 3 hours to get the results! (usually takes 1 hour) Tony went from wheelchair to a couch in the waiting room and used our cooler bag with treats as a pillow. He fell asleep and didn't realize the time passing. When they finally got the results, they called us in and her first words were "your blood work is great. No transfusion necessary". Of course, we didn't believe her. I asked for a printout and it said 112 for hemoglobin. I don't understand. If my memory is right, I think it hasn't been that high since February/March, I think. Anyways, it's good news! He received his first Neupogin injection and off we went. We had an hour or so to kill before his next appointment and visited his mom for a late lunch. He was not hungry. He was not cooperating with food or drinking today, but he did get more than I thought he would. Probably to make his mom feel better, but I don't care. He ate a bit! I can see him getting much skinnier by the day since Chemo began. It's normal. It's expected. I don't like this part.
At 3:30 we waited for his urology follow up appointment. She was running behind. The theme of the day. Wait - wait - wait - and, wait.
We learned that his nephrostomy tubes can stay in till April 2014. At that point they would need to be replaced.
We learned that it's ok to periodically have redness in his urine. (Whew)
Good news:
Over the weekend we both noticed that his tumor by the bikini line has shrunk 40% - 50% for sure.
Today, his stomach looks less swollen.
Are these buggers all shrinking? Looks like.
Thursday, we are back at Princess Margaret for a follow up appointment. I hope they measure the tumors again to see the difference.
AND, then one week today, they will be checking to see if his white blood cells, etc are good enough to harvest! We are 7-14 days away from harvesting. Cannot believe we are this close again.
Saturday, October 26, 2013
PMH was so quiet on a Saturday
We were at Princess Margaret Hospital (PMH) at 9 am today. Traffic was wonderful. Weather was very cold and wet. The hospital was a ghost town compared to Monday to Friday traffic. Scary quiet. Even the nurses spoke quietly to each patient in the chemo room. Tony needed assistance getting to the chemo unit. He's still weak. He's still coughing. Antibiotics will take 2-3 days to feel some relief from his pneumonia.
We are both exhausted from a heavy week. He goes to the bathroom very frequently. On the hour every hour. Disrupted sleep for days now. My mom was admitted to hospital on Wednesday, so life has been challenging between Tony and my mom. I am very grateful for a wonderful brother and his caring wife helping out every day with my mom while I dealt with Tony. My sons have stepped up to the plate with the family business. So, my stress, although it has been a crazy week, I've had this calmness about me. I keep reminding myself to live for today and plan for today. Tomorrow is another day. One day at a time.
Someone told me recently that if you could get several people in a room and put our worries and problems in a luggage in the middle, we would probably each take back our own luggage....makes you really think about that one.
I had a chance to finally visit my mom today while Tony stayed in his mom's care. Another wonderful woman. Now, after a very long week, we are home resting. We will be back to hospital bright and early Monday morning to check his blood levels. He will begin his neupogen injections for 4 days. This will prep him for harvesting his stem cells the following week. He can do this!!!! We need LOTS of stem cells in him in order to harvest.
Another early to bed night.
We are both exhausted from a heavy week. He goes to the bathroom very frequently. On the hour every hour. Disrupted sleep for days now. My mom was admitted to hospital on Wednesday, so life has been challenging between Tony and my mom. I am very grateful for a wonderful brother and his caring wife helping out every day with my mom while I dealt with Tony. My sons have stepped up to the plate with the family business. So, my stress, although it has been a crazy week, I've had this calmness about me. I keep reminding myself to live for today and plan for today. Tomorrow is another day. One day at a time.
Someone told me recently that if you could get several people in a room and put our worries and problems in a luggage in the middle, we would probably each take back our own luggage....makes you really think about that one.
I had a chance to finally visit my mom today while Tony stayed in his mom's care. Another wonderful woman. Now, after a very long week, we are home resting. We will be back to hospital bright and early Monday morning to check his blood levels. He will begin his neupogen injections for 4 days. This will prep him for harvesting his stem cells the following week. He can do this!!!! We need LOTS of stem cells in him in order to harvest.
Another early to bed night.
Friday, October 25, 2013
An unexpected extremely long day at Princess Margaret
We left the house at 8am and got home at 8pm. We are both exhausted, especially Tony.
Supposed to be a routine day. Quick. Disconnect the chemo IV and ciao! However, around 4am last night Tony began wheezing and had a bad coughing fit, with lots of yellow phlegm. Not a good sign. His weakness was getting worse as the day progressed. He walked himself from the front doors to the clinic registration section. However, when he had to walk to the chemo room he was staggering and very winded. He was leaning on the railings and me as he walked. When we got there we asked the nurse to get a doctor to see him. Told her about the wheezing and phlegm and excessive tiredness and very winded. The doctor, without seeing him, ordered an X-ray of his lungs and blood work. Off to X-ray we went once they disconnected all the IV's. However, this time, he asked for a wheelchair. He was so weak. I had to lift his foot and place it on the foot stand. He has been a very grateful patient throughout this entire journey. Always appreciating and thanking, me and the staff both. So I knew he wasn't well. When we got to the X-ray department, we found out that they were closed due to repairs till 4pm. They called a porter to whisk him off to Toronto General Hospital across the street to get it done there. We went site seeing in the basement, using the tunnels connecting a few hospitals together. Very interesting. It was a long walk. We missed the doctor, so when we returned she had to be paged again. We found out that his blood work showed a tremendous drop in his hemoglobin. Just 8 days ago it was 96. Today it was 63. No wonder this poor guy was winded, tired and extremely weak!!!! Poor Tony. Creatinine numbers are rising, but not alarming. Just told to drink more. It's chemo effects.
The doctor came to listen to his lungs. His right side was wheezy. She switched antibiotic medication and ordered two units of blood for transfusion. They could only give him one unit today as the chemo lab closes at 7pm. So we are back at 9am on a Saturday for the second unit.
Oh and I must mention that when we told the nurse about the air pocket in his IV, she said the tube was so tiny that the amount of oxygen was small and would not harm him. (Better safe than sorry)
It will be an early to bed evening.
Supposed to be a routine day. Quick. Disconnect the chemo IV and ciao! However, around 4am last night Tony began wheezing and had a bad coughing fit, with lots of yellow phlegm. Not a good sign. His weakness was getting worse as the day progressed. He walked himself from the front doors to the clinic registration section. However, when he had to walk to the chemo room he was staggering and very winded. He was leaning on the railings and me as he walked. When we got there we asked the nurse to get a doctor to see him. Told her about the wheezing and phlegm and excessive tiredness and very winded. The doctor, without seeing him, ordered an X-ray of his lungs and blood work. Off to X-ray we went once they disconnected all the IV's. However, this time, he asked for a wheelchair. He was so weak. I had to lift his foot and place it on the foot stand. He has been a very grateful patient throughout this entire journey. Always appreciating and thanking, me and the staff both. So I knew he wasn't well. When we got to the X-ray department, we found out that they were closed due to repairs till 4pm. They called a porter to whisk him off to Toronto General Hospital across the street to get it done there. We went site seeing in the basement, using the tunnels connecting a few hospitals together. Very interesting. It was a long walk. We missed the doctor, so when we returned she had to be paged again. We found out that his blood work showed a tremendous drop in his hemoglobin. Just 8 days ago it was 96. Today it was 63. No wonder this poor guy was winded, tired and extremely weak!!!! Poor Tony. Creatinine numbers are rising, but not alarming. Just told to drink more. It's chemo effects.
The doctor came to listen to his lungs. His right side was wheezy. She switched antibiotic medication and ordered two units of blood for transfusion. They could only give him one unit today as the chemo lab closes at 7pm. So we are back at 9am on a Saturday for the second unit.
Oh and I must mention that when we told the nurse about the air pocket in his IV, she said the tube was so tiny that the amount of oxygen was small and would not harm him. (Better safe than sorry)
It will be an early to bed evening.
Thursday, October 24, 2013
Dpace Chemo Day 4 - A quick visit to Emergency
YAY, IT'S OUR LAST DAY!
The day went ok. He continues to have a cough. Phlegm is starting to look yellow.....He's not wheezing or cackling in his longs. Must get this full dosage in him. Appetite is terrible. Smaller meals but more often. Fluid intake is good today. Lots going in, lots going out. Bodily functions are good!
However, at 7:25pm as he got up from the dinner table, he noticed an air pocket in one of his IV's. The alarm should have beeped, but it didn't. Both Tony and my son immediately said it wasn't good. I pulled out the manual that Princess Margaret Hospital gave us and called them. Answering machine. I left a message. So we waited about 10 minutes and just kept watching this air pocket continue to travel towards the picc line. We decided to call 911 for an ambulance. As they walked in, Princess Margaret Hospital returned my call. They said the ambulance crew should be able to help us. However, as the theme goes with Tony, "never seen this before. Not sure what to do" OMG!!!!!!!! Because it's chemo, and a PICC line they weren't sure. So, they called a doctor. The air pocket was 6" long along the tube. First time for us too! Good thing Tony had a smile on his face. I guess looking back, it was comedic. We had two ambulance crews, and clearly one was superior and animated and dramatic. The other just read the manual and said, just clamp it and take him to the hospital. Guess what? After all that, that's what they did. Around 8:15 off we go. I followed in my car as they drove to Headwaters Hospital in Orangeville. It was a ghost town. Lights were actually out in one waiting area. NO ONE WAS THERE WAITING TO BE REGISTERED! NO ONE! QUICK SERVICE! Four nurses were touching, poking, prodding, discussing, and scratching their heads.....It was really funny. The head nurse actually proceeded to unscrew a part with his bare hands and I stopped him and said, "shouldn't you being were blue gloves? This is chemo?" He looked at the other nurse and she said, "yes, you should" .....The looks Tony and I exchanged were hilarious. Had to be there. I wasn't nervous at all because the tube was clamped and wouldn't go in him, but still needed to be dealt with. In the end they figured out how to disconnect it and let the air go through and reattached it.
The doctor then came in to do a look over and we were free to go home.
After all that, the amount of air in that size of tube really wasn't enough to do harm.
(I need to mention that in the menu of the IV machine, it said "air alarm off")
Live and learn.
12 more hours left till he gets disconnected.
Almost there Tony. Almost there.
Wednesday, October 23, 2013
Dpace Chemo Day 3 - Getting weaker
As expected, the effects of chemo are kicking in . This morning he was very weak. In fact he felt dizzy when he got up and stumbled a bit. His coughing continues. A bit of phlegm is present. Shortness of breath is evident now when he speaks.
We were at Princess Margaret this morning at 9am. TWO HOUR DRIVE THIS MORNING!!!!!
Long long long.
The usual routine went pretty smoothly. We were done by 11:30. No fever. Blood pressure still good. They don't want to do blood work this week. They will be checking his levels on Monday.
For now, the next step is to disconnect him this Friday morning.
As I type, he is over half done his chemo.
As I type, he has 60 hours completed out of 96.....almost there Tony, almost there.
As I type, Robert has googled "What is Dpace chemo" and my blog is 5th in the search engine......OMG!
We were at Princess Margaret this morning at 9am. TWO HOUR DRIVE THIS MORNING!!!!!
Long long long.
The usual routine went pretty smoothly. We were done by 11:30. No fever. Blood pressure still good. They don't want to do blood work this week. They will be checking his levels on Monday.
For now, the next step is to disconnect him this Friday morning.
As I type, he is over half done his chemo.
As I type, he has 60 hours completed out of 96.....almost there Tony, almost there.
As I type, Robert has googled "What is Dpace chemo" and my blog is 5th in the search engine......OMG!
Tuesday, October 22, 2013
Dpace Chemo Day 2 - Doing well
29 hours of 96 hours behind us, as I type.
We decided to sleep separately last night. The bag holding the chemo would have been between us in bed and the instructions were to keep at room temperature. I was concerned about us both leaning into it or on it and warming it up. So, our son helped to drag a single mattress on the floor so I could be near. It worked ok, I guess. He didn't cough often, which was good, but the pump kept going on to administer the chemo. It was difficult to fall asleep, but we both did ok.
This morning he ate a good breakfast, but lunch was not successful. He just isn't hungry. Fluid intake is ok. We did walk to the mailbox this afternoon. He was extremely winded, but he did it! YAY.
He still has a slight dry cough. No fevers.
Tomorrow we need to go back to the hospital to change the bag.
We decided to sleep separately last night. The bag holding the chemo would have been between us in bed and the instructions were to keep at room temperature. I was concerned about us both leaning into it or on it and warming it up. So, our son helped to drag a single mattress on the floor so I could be near. It worked ok, I guess. He didn't cough often, which was good, but the pump kept going on to administer the chemo. It was difficult to fall asleep, but we both did ok.
This morning he ate a good breakfast, but lunch was not successful. He just isn't hungry. Fluid intake is ok. We did walk to the mailbox this afternoon. He was extremely winded, but he did it! YAY.
He still has a slight dry cough. No fevers.
Tomorrow we need to go back to the hospital to change the bag.
Monday, October 21, 2013
Dpace Chemo Day 1 - Finally here!
UGH! On the road by 7am. We are NOT morning people. It was still dark outside!!!!
On the car ride downtown Toronto, I rubbed Tony's belly and said "Let's do this".
Must get those lymph nodes reduced.
We arrived at the hospital before 9am. He was able to walk on his own to the chemo infusion lab. Opted out for a chair on wheels! Good sign, right?
They hooked him up to his picc line and off we went with a bag. Quite heavy, but he carried it by his side. He has two battery operated IV pumps. We were done by 11am. Not bad, actually. We even got a visit from the stem cell transplant coordinator, Andrew, which was nice.
Reminded us that any temperature of 38.5 or over, we must go to emergency. Any coughing up of phlegm, yellow or green,we must go to emergency. Not allowed any Tylenol to mask signs of fevers. Other than that, see you on Wednesday. In the meantime, his appetite is so little. The sweats from the neck up have begun. Quite often actually. Just like when he was in the hospital weeks ago. Thank goodness for that battery operated fan!
I shall keep you posted nightly till the weekend.
As he says "currently done, 8 of 96 hours". Gosh, when you put it that way, it sounds so far away.
Keep those illnesses away. Let's stay positive! He can do this! We ask at this time that visitors stay away as his immunity system will be compromised for the next two weeks.
In the meantime, any good advice on how to get him to drink or eat more would be appreciated. He will soon have a "metal" mouth so I shall have to be creative to get him to eat and drink.
Feel free to email or text me with ideas.
On the car ride downtown Toronto, I rubbed Tony's belly and said "Let's do this".
Must get those lymph nodes reduced.
We arrived at the hospital before 9am. He was able to walk on his own to the chemo infusion lab. Opted out for a chair on wheels! Good sign, right?
They hooked him up to his picc line and off we went with a bag. Quite heavy, but he carried it by his side. He has two battery operated IV pumps. We were done by 11am. Not bad, actually. We even got a visit from the stem cell transplant coordinator, Andrew, which was nice.
Reminded us that any temperature of 38.5 or over, we must go to emergency. Any coughing up of phlegm, yellow or green,we must go to emergency. Not allowed any Tylenol to mask signs of fevers. Other than that, see you on Wednesday. In the meantime, his appetite is so little. The sweats from the neck up have begun. Quite often actually. Just like when he was in the hospital weeks ago. Thank goodness for that battery operated fan!
I shall keep you posted nightly till the weekend.
As he says "currently done, 8 of 96 hours". Gosh, when you put it that way, it sounds so far away.
Keep those illnesses away. Let's stay positive! He can do this! We ask at this time that visitors stay away as his immunity system will be compromised for the next two weeks.
In the meantime, any good advice on how to get him to drink or eat more would be appreciated. He will soon have a "metal" mouth so I shall have to be creative to get him to eat and drink.
Feel free to email or text me with ideas.
Friday, October 18, 2013
It's a GO for this Monday
Tuesday, we went to follow up with the urologist with regards to his nephrostomy tube wounds. All good. No sign of infection. Antibiotics ended the day before. She did a urine and blood test anyways, but the wound looked good. Still bleeding, but that was because every time I would remove the gauze to keep wound area clean, it would stick to the wound and open up again. She told me to put polysporin on it (generously) and to change gauze less often.
Thursday, we went to Princess Margaret Hospital. Goodness gracious us! It took almost 2 hours to commute downtown from our home in the morning. Had to be there for 7:50. I'm always driving to appointments and Tony rests or sleeps while I drive. They did blood work and we had to wait for the results before seeing the doctor. At 11am they called us in. Blood results are good. Hemoglobin was at 97. Low, but good to go for treatment this Monday. We had a nice chat with the stem cell transplant coordinator. Seems like they all know us there as Tony continues to bombard their inbox with all the complications he has had! LOL
Then another doctor came to check his wound and manipulated it by applying pressure and squeezing it. To my surprise, Tony said it didn't hurt and she said it was all good to go for chemo. No pus! YAY!
Next the specialist came in. On a physical examination, they felt another tumor on his right armpit and another one, which is currently visible by eye on his bikini line. That one is rather large and got large within 14 days. The doctor didn't feel it was necessary to do a CT scan at this point as she feels it's all related to his disease. The D-Pace chemo treatment will shrink it. In the meantime, they measured both his abdominal area and the tumor at his bikini line. Then we had to get LOTS of prescriptions at the pharmacy in prep for the week. We decided to wait for it at the hospital pharmacy. That took another hour!
I was exhausted and you can only imagine how Tony felt. His breathing is getting more and more laboured. He gets winded from walking from the bed to the bathroom. He continues to put a very brave front and although we have been very frustrated with all these delays, we are very hopeful that this will work. He already responded once. He can do it again! He CAN! I know it. I feel it.
The next two weeks will be physically challenging for Tony.
Fellow readers, please continue to keep him in your thoughts and prayers.
PS: we received a snail mail the other day from a former employee. Just wanted to say thank you for the letter. You brought up so many work related memories from the past which had us in stitches and in tears from your kind words. With all this technology today (emails, Facebook and texting) it is truly refreshing to receive a letter in the mail.
PSS: thank you to my neighbour who came through for us on a difficult night with dinner on Thursday night. Your timing was perfect!
AND, thank you everyone else who is texting, emailing and calling. Always a huge comfort to know you are reading this, praying for us and supporting us.
Thursday, we went to Princess Margaret Hospital. Goodness gracious us! It took almost 2 hours to commute downtown from our home in the morning. Had to be there for 7:50. I'm always driving to appointments and Tony rests or sleeps while I drive. They did blood work and we had to wait for the results before seeing the doctor. At 11am they called us in. Blood results are good. Hemoglobin was at 97. Low, but good to go for treatment this Monday. We had a nice chat with the stem cell transplant coordinator. Seems like they all know us there as Tony continues to bombard their inbox with all the complications he has had! LOL
Then another doctor came to check his wound and manipulated it by applying pressure and squeezing it. To my surprise, Tony said it didn't hurt and she said it was all good to go for chemo. No pus! YAY!
Next the specialist came in. On a physical examination, they felt another tumor on his right armpit and another one, which is currently visible by eye on his bikini line. That one is rather large and got large within 14 days. The doctor didn't feel it was necessary to do a CT scan at this point as she feels it's all related to his disease. The D-Pace chemo treatment will shrink it. In the meantime, they measured both his abdominal area and the tumor at his bikini line. Then we had to get LOTS of prescriptions at the pharmacy in prep for the week. We decided to wait for it at the hospital pharmacy. That took another hour!
I was exhausted and you can only imagine how Tony felt. His breathing is getting more and more laboured. He gets winded from walking from the bed to the bathroom. He continues to put a very brave front and although we have been very frustrated with all these delays, we are very hopeful that this will work. He already responded once. He can do it again! He CAN! I know it. I feel it.
The next two weeks will be physically challenging for Tony.
Fellow readers, please continue to keep him in your thoughts and prayers.
PS: we received a snail mail the other day from a former employee. Just wanted to say thank you for the letter. You brought up so many work related memories from the past which had us in stitches and in tears from your kind words. With all this technology today (emails, Facebook and texting) it is truly refreshing to receive a letter in the mail.
PSS: thank you to my neighbour who came through for us on a difficult night with dinner on Thursday night. Your timing was perfect!
AND, thank you everyone else who is texting, emailing and calling. Always a huge comfort to know you are reading this, praying for us and supporting us.
Thursday, October 10, 2013
Nephrostomy Decision
Tony had a terrible night sleep at the hospital. They put him in a ward (4 beds). One patient was not mentally with it and created situations throughout the night and day. But that is expected in a hospital. Cannot really sleep well with constant interruptions.
At 1pm yesterday, they took him down to radiology and the procedure went really well. The only pain he felt was the needle to numb him. He was awake throughout the entire procedure. The decision was to keep the left side as an internal by removing the exterior parts attached and they kept the tubes inside. The right one is where the "infection" was so they removed the exterior and created a second hole and replaced the tubes. The radiologist believes by looking at the wound that it was inflamed and most likely irritated We were told to keep the wounds dry, changing the bandages daily and frequently as needed when moisture builds up. He is passing urine normally. A bit red, but expected due to the irritation regarding the procedure. This morning it's a more normal colour.
A few days ago, we noticed that the wound area with regards to the testicle removal was swollen. The urologist showed up at 7pm to check up on Tony and she's not sure what's going on there. Could be the tumours or fluid build up. Unless the nephrostomy wounds heal, we cannot begin chemo. It is scheduled for October 21. In the meantime, he is on two antibiotics.
He was released last night and had a good rest in his own bed.
One day at a time.
At 1pm yesterday, they took him down to radiology and the procedure went really well. The only pain he felt was the needle to numb him. He was awake throughout the entire procedure. The decision was to keep the left side as an internal by removing the exterior parts attached and they kept the tubes inside. The right one is where the "infection" was so they removed the exterior and created a second hole and replaced the tubes. The radiologist believes by looking at the wound that it was inflamed and most likely irritated We were told to keep the wounds dry, changing the bandages daily and frequently as needed when moisture builds up. He is passing urine normally. A bit red, but expected due to the irritation regarding the procedure. This morning it's a more normal colour.
A few days ago, we noticed that the wound area with regards to the testicle removal was swollen. The urologist showed up at 7pm to check up on Tony and she's not sure what's going on there. Could be the tumours or fluid build up. Unless the nephrostomy wounds heal, we cannot begin chemo. It is scheduled for October 21. In the meantime, he is on two antibiotics.
He was released last night and had a good rest in his own bed.
One day at a time.
Wednesday, October 9, 2013
Back to hospital for a sleepover - by choice
Tuesday was the appointment with urologist for her opinion on these nephrostomy tubes.
According to the cultures PMH took of blood, urine and pus:
THERE IS NO SIGN OF INFECTION!!!!!!!!!!!!!!!!!!!!!!!
Can you feel my frustration? However, a decision needs to be made with regards to the tubes. He has an open wound and when you have chemo and an open wound, the chance of infection will be greater. This is the opinion of both oncology at Princess Margaret Hospital and the urologist.
The options are:
1. Keep the tubes in but take out the external part to heal the wound on his skin. If there's a possible infection, they may be closing it up in his body, creating more problems.
2. Take the tubes completely out. But, inside of him they are set up as a by-pass. So, is he passing urine on his own or are the tubes working. Are the lymph nodes interfering somehow with his normal bodily functions?
3. Take one tube out completely and the other one keep in but take the external part out. Therefore, both outside wounds would heal and no open wound.
Not sure about Tony, but we just kept asking the same question: "We don't understand". I suggested a diagram to give us a visual of how these tubes work and I'm understanding a bit better, but still scratching my head. These tubes went in his back, through the kidney, down to his bladder. How do they know it's the tubes working and not the natural way? Science proved no infection, so why the concern? Urologist thinks that it's just skin irritation from the tape and handling.
The other thing that really had me scratching my head was she said she really didn't know the right answer. I suggested she consult with the other team of urologists in her very busy office and basically discuss the pros and cons of this decision. Meanwhile, we delayed chemo treatment (3 weeks) for this!
The other thing is, that to book this procedure with radiology could take 7 plus days. She recommended he get admitted to hospital to speed things up. Chemo IS scheduled for October 21. Time is very important right now. Her secretary called the hospital and he has taken the last bed. Off we go to the hospital. Get there at 4:00pm. They said bed isn't yet ready. So we told him we would be going home to pack a bag for him. Not recommended, but ok. We were warned to be quick! HA!
So we went home. Packed a bag. Ate dinner. Back at hospital by 7:00pm. HA!
Guess what? Room still not ready! At 11:15pm, FINALLY, we were escorted to his room.
A very long day of waiting.
Throughout this evening of waiting in emergency for a bed, Tony had sensations of passing urine very frequently, but very little coming out.....oh oh. Here we go again. Over night the nurses recorded his every drop and it was a substantial amount. He is feeling better in that department this morning.
Let's see how today goes. Fingers crossed that they squeeze him in this afternoon.
According to the cultures PMH took of blood, urine and pus:
THERE IS NO SIGN OF INFECTION!!!!!!!!!!!!!!!!!!!!!!!
Can you feel my frustration? However, a decision needs to be made with regards to the tubes. He has an open wound and when you have chemo and an open wound, the chance of infection will be greater. This is the opinion of both oncology at Princess Margaret Hospital and the urologist.
The options are:
1. Keep the tubes in but take out the external part to heal the wound on his skin. If there's a possible infection, they may be closing it up in his body, creating more problems.
2. Take the tubes completely out. But, inside of him they are set up as a by-pass. So, is he passing urine on his own or are the tubes working. Are the lymph nodes interfering somehow with his normal bodily functions?
3. Take one tube out completely and the other one keep in but take the external part out. Therefore, both outside wounds would heal and no open wound.
Not sure about Tony, but we just kept asking the same question: "We don't understand". I suggested a diagram to give us a visual of how these tubes work and I'm understanding a bit better, but still scratching my head. These tubes went in his back, through the kidney, down to his bladder. How do they know it's the tubes working and not the natural way? Science proved no infection, so why the concern? Urologist thinks that it's just skin irritation from the tape and handling.
The other thing that really had me scratching my head was she said she really didn't know the right answer. I suggested she consult with the other team of urologists in her very busy office and basically discuss the pros and cons of this decision. Meanwhile, we delayed chemo treatment (3 weeks) for this!
The other thing is, that to book this procedure with radiology could take 7 plus days. She recommended he get admitted to hospital to speed things up. Chemo IS scheduled for October 21. Time is very important right now. Her secretary called the hospital and he has taken the last bed. Off we go to the hospital. Get there at 4:00pm. They said bed isn't yet ready. So we told him we would be going home to pack a bag for him. Not recommended, but ok. We were warned to be quick! HA!
So we went home. Packed a bag. Ate dinner. Back at hospital by 7:00pm. HA!
Guess what? Room still not ready! At 11:15pm, FINALLY, we were escorted to his room.
A very long day of waiting.
Throughout this evening of waiting in emergency for a bed, Tony had sensations of passing urine very frequently, but very little coming out.....oh oh. Here we go again. Over night the nurses recorded his every drop and it was a substantial amount. He is feeling better in that department this morning.
Let's see how today goes. Fingers crossed that they squeeze him in this afternoon.
Sunday, October 6, 2013
Two more week delay
Sorry, I know I should have blogged sooner, but frustration has seriously taken over.
I did make a physical appearance on Wednesday to Humber River hospital to the Patient Relations Department. They basically confirmed everything that the doctors have been telling us.
"your husband was the first patient to ever receive Dpace chemo at this hospital"
"Should never have happened that first time"
"it was a special situation"
"Mrs. G....., I'm very sorry this happened to you and your husband"
I guess you can argue forever about this, but it really doesn't change anything.
I guess I can fight, fight, fight, but realistically, it won't change anything. We are now taken care of by PMH, so he is in very good hands.
Tuesday, we both did a meditation session to basically calm ourselves. Regroup our thoughts. We went to Tony's cousin's place, BlissOm, which offers a holistic living centre. (http://www.blissom.ca)
All I can say, is thank you Lori, for a wonderful experience with my husband.
Wednesday, the homecare nurse was changing Tony's bandages and commented on the pus coming out of his wound (very little) and suggested he should get looked at for a possible infection. This happened once before, and we were sent home with nothing to be concerned about.
Thursday, we had our appointment with PMH downtown.
Plan is to begin Dpace Chemo this Monday. At the end of the speech, he asked if we had questions.....yes, take a look at his bandages on his right nephrostomy wound......Well, chemo was cancelled immediately. Possible start of infection. No way he can get chemo. They took a swab of the pus and sent him for more blood and urine tests for culture to see the type of infection. In the meantime, PMH prescribed oral antibiotics for 7 days. Plan is to do the chemo Oct 14.....but after talking with the urologist, it was decided that he begins chemo on October 21.
Huge disappointment. HUGE. Perhaps the first chemo delay was a blessing in disguise? What if he had started the original chemo last Monday? This wound would have excelled pretty fast, I think. Still, a huge disappointment, but the right decision. The urologist ordered a different type of antibiotics. Four pills a day for 14 days. (Apo-Cephalex Cephalexin)
We have a follow up appointment with urologist this Tuesday. I believe she's going to order to have the nephrostomy tubes removed. Give him time to heal the wounds and begin chemo. We will find out more on Tuesday. The results on cultures should be done by now. I'll be phoning the hospital for the results tomorrow.
As for how is Tony feeling, well, he continues to be a very brave man. Always positive. His breathing continues to be normal. His hemoglobin is still over 100.
I've had such a heavy heart this past week. Anxiety, worry, disappointment, anger.....not really healthy.
My sister-in-law has found a Multiple Myeloma support group in Toronto. The meeting was Saturday. I was very nervous about maintaining my emotions prior to attending. But I knew that going was the right thing to do. To get some positive feedback. To get me (us) back on the right frame of mind. Being with my sister-in-law at the meeting, (the best supporter I have right now) gave me the courage to go. I met others with Multiple Myeloma. I met spouses, like me, who shared the same struggles that I have. The guest speaker was a representative from Wellspring. What a great place. I'm going to share what their brochure describes. This is for those dealing with cancer (I'm linked to other cancer blogs) can go to.
From their brochure:
"Wellspring provides a wide range of cancer support programs and services, at no charge, to meet the emotional, social, psychological and information needs of people living with cancer and those who care for them." www.wellspring.ca
I just may tap into this support group! Wonderful!
I left the meeting with all my anxiety, anger, disappointment all lifted from my chest and shoulders.
Thank you Fior, for finding this group.
Thank you Fior, for just being there for me and making my own decision to go, when I was ready.
Thank you Fior, for just listening to me. Just knowing that you're there for me, means volumes.
And, now I met others who know what I'm going through. What we are going through.
Come on tomorrow. I'm ready for you.
Before I sign off, I need to share something I just read, which actually inspired me to blog tonight.
If you are depressed, you are living in the past.
If you are anxious, you are living in the future.
If you are at peace, you are living in the present.
I did make a physical appearance on Wednesday to Humber River hospital to the Patient Relations Department. They basically confirmed everything that the doctors have been telling us.
"your husband was the first patient to ever receive Dpace chemo at this hospital"
"Should never have happened that first time"
"it was a special situation"
"Mrs. G....., I'm very sorry this happened to you and your husband"
I guess you can argue forever about this, but it really doesn't change anything.
I guess I can fight, fight, fight, but realistically, it won't change anything. We are now taken care of by PMH, so he is in very good hands.
Tuesday, we both did a meditation session to basically calm ourselves. Regroup our thoughts. We went to Tony's cousin's place, BlissOm, which offers a holistic living centre. (http://www.blissom.ca)
All I can say, is thank you Lori, for a wonderful experience with my husband.
Wednesday, the homecare nurse was changing Tony's bandages and commented on the pus coming out of his wound (very little) and suggested he should get looked at for a possible infection. This happened once before, and we were sent home with nothing to be concerned about.
Thursday, we had our appointment with PMH downtown.
Plan is to begin Dpace Chemo this Monday. At the end of the speech, he asked if we had questions.....yes, take a look at his bandages on his right nephrostomy wound......Well, chemo was cancelled immediately. Possible start of infection. No way he can get chemo. They took a swab of the pus and sent him for more blood and urine tests for culture to see the type of infection. In the meantime, PMH prescribed oral antibiotics for 7 days. Plan is to do the chemo Oct 14.....but after talking with the urologist, it was decided that he begins chemo on October 21.
Huge disappointment. HUGE. Perhaps the first chemo delay was a blessing in disguise? What if he had started the original chemo last Monday? This wound would have excelled pretty fast, I think. Still, a huge disappointment, but the right decision. The urologist ordered a different type of antibiotics. Four pills a day for 14 days. (Apo-Cephalex Cephalexin)
We have a follow up appointment with urologist this Tuesday. I believe she's going to order to have the nephrostomy tubes removed. Give him time to heal the wounds and begin chemo. We will find out more on Tuesday. The results on cultures should be done by now. I'll be phoning the hospital for the results tomorrow.
As for how is Tony feeling, well, he continues to be a very brave man. Always positive. His breathing continues to be normal. His hemoglobin is still over 100.
I've had such a heavy heart this past week. Anxiety, worry, disappointment, anger.....not really healthy.
My sister-in-law has found a Multiple Myeloma support group in Toronto. The meeting was Saturday. I was very nervous about maintaining my emotions prior to attending. But I knew that going was the right thing to do. To get some positive feedback. To get me (us) back on the right frame of mind. Being with my sister-in-law at the meeting, (the best supporter I have right now) gave me the courage to go. I met others with Multiple Myeloma. I met spouses, like me, who shared the same struggles that I have. The guest speaker was a representative from Wellspring. What a great place. I'm going to share what their brochure describes. This is for those dealing with cancer (I'm linked to other cancer blogs) can go to.
From their brochure:
"Wellspring provides a wide range of cancer support programs and services, at no charge, to meet the emotional, social, psychological and information needs of people living with cancer and those who care for them." www.wellspring.ca
I just may tap into this support group! Wonderful!
I left the meeting with all my anxiety, anger, disappointment all lifted from my chest and shoulders.
Thank you Fior, for finding this group.
Thank you Fior, for just being there for me and making my own decision to go, when I was ready.
Thank you Fior, for just listening to me. Just knowing that you're there for me, means volumes.
And, now I met others who know what I'm going through. What we are going through.
Come on tomorrow. I'm ready for you.
Before I sign off, I need to share something I just read, which actually inspired me to blog tonight.
If you are depressed, you are living in the past.
If you are anxious, you are living in the future.
If you are at peace, you are living in the present.
Tuesday, October 1, 2013
Chemo was a no go
Yesterday was a bad day. I had to do the 24 hour rule, before blogging. I was so upset.
We arrived for 8am at Humber River Hospital. They gave Tony his monthly 2 hour IV drip for bone strengthening. They didn't do blood work as it was all done and approved for chemo last Thursday. After the IV drip, they disconnected him and basically said they wanted to wait for a room. They were going to admit him for the chemo. Hours later, the Doctor came to find us and directed us to a private room.
She looked upset...... We both didn't have a good feeling......
She started by apologizing to us saying that chemo was not going to happen. (chemo to reduce the lymph nodes) It was an "administrative" thing. WTF! They gave him the chemo 4 weeks ago, why couldn't they do it again? Apparently, (brace yourself) Tony was the FIRST patient to ever receive the Dpace chemo at Humber River Hospital as an inpatient. Another first. Seems to be the theme with Tony since this entire journey.
My problem grasping this entire day is:
-why wasn't this addressed 4 weeks ago when they administered this chemo?
-We were there last Thursday! Why wasn't it questioned then?
-Why wasn't the doctor in Tony's care aware of this chemo not allowed at Humber River? She's in oncology and has many patients with Multiple Myeloma!
-Was there a problem that we don't know about when they gave it to him the first time?
- If Princess Margaret Hospital instructed the doctors at Humber River Hospital, didn't they know that Humber doesn't administer this chemo? A first?
So, after many, many, many heartfelt apologies for this delay, our appointment was over. Done. Just over. Go home and Princess Margaret will be taking over now. They will be calling you. Plan is that Monday, October 7th they will be begin chemo. SEVEN DAY DELAY.
I swear, I felt like I was violated.....Not a good feeling. If another person talked about it to me, I think I would have done something I would have regretted forever. Seriously. Felt like he was denied care. In Canada! How is this possible?
I emailed and left a message at Princess Margaret Hospital (PMH)
Late last night they emailed a very brief response. Blood work and appointment this Thursday. Chemo is booked for Monday. That's it.
Today, I was depressed and still shocked about this. I wasn't sure how to best tackle this situation. I know that we are out of luck in getting it sooner, but somehow, this needs to be addressed. For Tony and the next guy.
Late morning someone called us to say to go to patient relations and get answers. "Do not let this go".
hummmmm They were pretty insistent saying this should never have happened this way. Very apologetic as well. Seven more days is seven more days. Shouldn't have happened.
Guess what? I got all riled up again. On a mission.
I blasted an email to PMH and phoned Patient Relations. at Humber Hospital Left a message with Patient Relations. I was nice.
Around 5:30 (I'm impressed as they close at 4:30 as per voice message) a women called and wanted the details of my complaint. She will be discussing this situation with the head oncologist and get back to me Wednesday. All words that I'm sure is said to all.
Around 7:00pm, PMH telephoned us in response to my email. Wonderful chat! They always say the right things. Basically assured us that 7 days isn't really harmful in the scope of things. This chemo is administered every 4-6 weeks and this Monday will be 4 1/2. The plan is to get reassessed with the blood work this Thursday and on Monday we go in to PMH and they will hook Tony up to a portable chemo IV system. Portable. Making him mobile. Making him go home with instructions. The following Wednesday we go back for them to change the bags and back again on Friday to disconnect.
We are now in the hands of PMH, where I wanted him to be for the last 8 weeks!
We arrived for 8am at Humber River Hospital. They gave Tony his monthly 2 hour IV drip for bone strengthening. They didn't do blood work as it was all done and approved for chemo last Thursday. After the IV drip, they disconnected him and basically said they wanted to wait for a room. They were going to admit him for the chemo. Hours later, the Doctor came to find us and directed us to a private room.
She looked upset...... We both didn't have a good feeling......
She started by apologizing to us saying that chemo was not going to happen. (chemo to reduce the lymph nodes) It was an "administrative" thing. WTF! They gave him the chemo 4 weeks ago, why couldn't they do it again? Apparently, (brace yourself) Tony was the FIRST patient to ever receive the Dpace chemo at Humber River Hospital as an inpatient. Another first. Seems to be the theme with Tony since this entire journey.
My problem grasping this entire day is:
-why wasn't this addressed 4 weeks ago when they administered this chemo?
-We were there last Thursday! Why wasn't it questioned then?
-Why wasn't the doctor in Tony's care aware of this chemo not allowed at Humber River? She's in oncology and has many patients with Multiple Myeloma!
-Was there a problem that we don't know about when they gave it to him the first time?
- If Princess Margaret Hospital instructed the doctors at Humber River Hospital, didn't they know that Humber doesn't administer this chemo? A first?
So, after many, many, many heartfelt apologies for this delay, our appointment was over. Done. Just over. Go home and Princess Margaret will be taking over now. They will be calling you. Plan is that Monday, October 7th they will be begin chemo. SEVEN DAY DELAY.
I swear, I felt like I was violated.....Not a good feeling. If another person talked about it to me, I think I would have done something I would have regretted forever. Seriously. Felt like he was denied care. In Canada! How is this possible?
I emailed and left a message at Princess Margaret Hospital (PMH)
Late last night they emailed a very brief response. Blood work and appointment this Thursday. Chemo is booked for Monday. That's it.
Today, I was depressed and still shocked about this. I wasn't sure how to best tackle this situation. I know that we are out of luck in getting it sooner, but somehow, this needs to be addressed. For Tony and the next guy.
Late morning someone called us to say to go to patient relations and get answers. "Do not let this go".
hummmmm They were pretty insistent saying this should never have happened this way. Very apologetic as well. Seven more days is seven more days. Shouldn't have happened.
Guess what? I got all riled up again. On a mission.
I blasted an email to PMH and phoned Patient Relations. at Humber Hospital Left a message with Patient Relations. I was nice.
Around 5:30 (I'm impressed as they close at 4:30 as per voice message) a women called and wanted the details of my complaint. She will be discussing this situation with the head oncologist and get back to me Wednesday. All words that I'm sure is said to all.
Around 7:00pm, PMH telephoned us in response to my email. Wonderful chat! They always say the right things. Basically assured us that 7 days isn't really harmful in the scope of things. This chemo is administered every 4-6 weeks and this Monday will be 4 1/2. The plan is to get reassessed with the blood work this Thursday and on Monday we go in to PMH and they will hook Tony up to a portable chemo IV system. Portable. Making him mobile. Making him go home with instructions. The following Wednesday we go back for them to change the bags and back again on Friday to disconnect.
We are now in the hands of PMH, where I wanted him to be for the last 8 weeks!
Sunday, September 29, 2013
Cycle Two of Chemo begins tomorrow
Just letting everyone know that this week has gone by great. We saw the oncology clinic on Thursday and his hemoglobin continues to be in the triple digits (103). His breathing is good. His mind is VERY sharp. His appetite is ok. Wish is was better, but he's eating enough to get by. He has lost more weight. His Achilles heal is bothering him and walks with a limp. We went for a very short walk outside today. It's a beautiful day.
Tomorrow he begins four days straight of IV chemo drip, as an in patient.
This is quite the formula: Dexamethasone, CISplatin, DOXOrubicin Cyclophosphamide and Etoposide.
We ask that no visitors come visit as this will take two weeks to recover from. After which the harvesting will take place. Waiting to hear back from Princess Margaret regarding more information. I believe that on Friday or early next week, they will be doing another CT scan to see how the lymph nodes are doing.
Still needing your prayers.
I'll keep you posted with his progress.
Mary
Tomorrow he begins four days straight of IV chemo drip, as an in patient.
This is quite the formula: Dexamethasone, CISplatin, DOXOrubicin Cyclophosphamide and Etoposide.
We ask that no visitors come visit as this will take two weeks to recover from. After which the harvesting will take place. Waiting to hear back from Princess Margaret regarding more information. I believe that on Friday or early next week, they will be doing another CT scan to see how the lymph nodes are doing.
Still needing your prayers.
I'll keep you posted with his progress.
Mary
Friday, September 20, 2013
A good week
Sometimes, the more you have on your plate, the more you accomplish!
Tony has been home now since Sunday. We've both been really catching up on sleep and resting. I haven't really done much work, although there's lots to do.
Monday was the first day for Home Care to visit. They have to give him Neupogen, which boosts his white blood cells for five days straight with a needle. They check his temperature, blood pressure and change the dressings on the PICC line (IV) and his nephrostomy bandages.
The first nurse was not a good one. She said his blood pressure was 160/100. Temperature was 37.4 and his wound on one of the nephrostomys looked infected.....holy smokes! She left the house around 1:30-2:00. I just looked at Tony and said, let's go to emerg. Oncology clinic is open till 4:00 and the nurse practitioner that looked after him for 4 weeks is in till 4:00. So off we went. (keep in mind that I had to go to the hospital at 10am to pick up his prescription for the needle that same morning)
While in Emergency, during the Triage meeting, the nurse practitioner returned my call. She freaked out. Said she was on her way downstairs to us. Found a room immediately. Looked at his wound and his vital signs and said go home. You're fine. No infection. Holy smokes! So back home we go. I guess it was better to be safe than sorry.
Five needles later, he continues to gain more strength. Breathing is good. Human plumbing system is working normally. He is talking like the Tony I know and love.
Enjoy the weekend everyone!
Time to relax and enjoy life.
Mary
Tony has been home now since Sunday. We've both been really catching up on sleep and resting. I haven't really done much work, although there's lots to do.
Monday was the first day for Home Care to visit. They have to give him Neupogen, which boosts his white blood cells for five days straight with a needle. They check his temperature, blood pressure and change the dressings on the PICC line (IV) and his nephrostomy bandages.
The first nurse was not a good one. She said his blood pressure was 160/100. Temperature was 37.4 and his wound on one of the nephrostomys looked infected.....holy smokes! She left the house around 1:30-2:00. I just looked at Tony and said, let's go to emerg. Oncology clinic is open till 4:00 and the nurse practitioner that looked after him for 4 weeks is in till 4:00. So off we went. (keep in mind that I had to go to the hospital at 10am to pick up his prescription for the needle that same morning)
While in Emergency, during the Triage meeting, the nurse practitioner returned my call. She freaked out. Said she was on her way downstairs to us. Found a room immediately. Looked at his wound and his vital signs and said go home. You're fine. No infection. Holy smokes! So back home we go. I guess it was better to be safe than sorry.
Five needles later, he continues to gain more strength. Breathing is good. Human plumbing system is working normally. He is talking like the Tony I know and love.
Enjoy the weekend everyone!
Time to relax and enjoy life.
Mary
Sunday, September 15, 2013
Home Sweet Home
Well, this morning at 8am, I got the phone call from Tony,
saying "hurry up and get me. I'm coming home!"
Not a text, but a phone call :)
These past couple of days he has shown a tremendous improvement.
His breathing is better now than when he was first admitted four weeks ago.
His attitude is back. (good thing!)
Today, he walked the farthest and longest in four weeks.
(Saturday, he actually went outside to walk his parents to the front and sat on a bench, getting fresh air)
Pneumonia is better. Wheezing is no longer evident.
His plumbing functions are back to normal.
Nephrostomy tubes are still in, but capped. His kidneys are functioning normally. They decided to keep the tubes inside the kidneys in case he needs them for the next chemo treatment. I think it's a good idea. Chemo can be hard on the kidney, especially with Multiple Myeloma. They can stay in for 30 days. Home Care will be coming every day to monitor the wound and to administer a needle daily, for 5 days. This is to increase his white cell count. Can't remember the name right now.
For now, followup at the oncology clinic this week and next week.
For now, minimal contact with people. Don't want to catch anything.
Tonight, let's hope he gets a great night's sleep.....Without nurses waking him up or hallway conversations with patients and staff outside his room.
More soon.
Mary
saying "hurry up and get me. I'm coming home!"
Not a text, but a phone call :)
These past couple of days he has shown a tremendous improvement.
His breathing is better now than when he was first admitted four weeks ago.
His attitude is back. (good thing!)
Today, he walked the farthest and longest in four weeks.
(Saturday, he actually went outside to walk his parents to the front and sat on a bench, getting fresh air)
Pneumonia is better. Wheezing is no longer evident.
His plumbing functions are back to normal.
Nephrostomy tubes are still in, but capped. His kidneys are functioning normally. They decided to keep the tubes inside the kidneys in case he needs them for the next chemo treatment. I think it's a good idea. Chemo can be hard on the kidney, especially with Multiple Myeloma. They can stay in for 30 days. Home Care will be coming every day to monitor the wound and to administer a needle daily, for 5 days. This is to increase his white cell count. Can't remember the name right now.
For now, followup at the oncology clinic this week and next week.
For now, minimal contact with people. Don't want to catch anything.
Tonight, let's hope he gets a great night's sleep.....Without nurses waking him up or hallway conversations with patients and staff outside his room.
More soon.
Mary
Thursday, September 12, 2013
Two good days in a row
Even though they changed the release date from hospital, I still consider today a good day.
Two days in a row with improvements.
Still breathing heavily, but so much better.
Sitting upright in bed without my craning him up or using the bed buttons to lift him.
Less dependant on oxygen mask. In fact he looked for it only twice today.
This morning he walked the entire 4th floor.
Weight loss, which is really most likely water retention.
Right foot is just about there with regards to the swelling going down.
Left foot is looking better, but still can't put his shoe on. But clearly better.
We forgot to ask about his hemoglobin today.....
Bronchospopy showed no surprises after 48 hours of tests. All ok.
Today at 1pm they capped off his nephrostomy tubes and at 3pm he had his first feeling of urinating and did it all on his own. Every couple of hours he went. Urologist feels that today and tomorrow won't be enough time to confirm functionality. She wants him to stay till Sunday. Doesn't want another set back. Fear is that the bladder won't work and back up again in his kidneys and we would be back to two weeks ago. I'm actually ok with that decision. Better safe than sorry. Don't want to deal with emergency on the weekend! No way!
On Monday, Homecare will assess him with his needs and he'll most likely be sent home then.
Follow up appointment at the oncology clinic during the week to be done.
Two good days in a row.....
Nite everyone!
Sleep tight!
Mary
Two days in a row with improvements.
Still breathing heavily, but so much better.
Sitting upright in bed without my craning him up or using the bed buttons to lift him.
Less dependant on oxygen mask. In fact he looked for it only twice today.
This morning he walked the entire 4th floor.
Weight loss, which is really most likely water retention.
Right foot is just about there with regards to the swelling going down.
Left foot is looking better, but still can't put his shoe on. But clearly better.
We forgot to ask about his hemoglobin today.....
Bronchospopy showed no surprises after 48 hours of tests. All ok.
Today at 1pm they capped off his nephrostomy tubes and at 3pm he had his first feeling of urinating and did it all on his own. Every couple of hours he went. Urologist feels that today and tomorrow won't be enough time to confirm functionality. She wants him to stay till Sunday. Doesn't want another set back. Fear is that the bladder won't work and back up again in his kidneys and we would be back to two weeks ago. I'm actually ok with that decision. Better safe than sorry. Don't want to deal with emergency on the weekend! No way!
On Monday, Homecare will assess him with his needs and he'll most likely be sent home then.
Follow up appointment at the oncology clinic during the week to be done.
Two good days in a row.....
Nite everyone!
Sleep tight!
Mary
The caregiver
The caregiver: that's me, the wife.
I went to my family doctor Tuesday afternoon. I'm truly exhausted. We are starting week 4 of hospitals. I cannot believe how fast time is going by. I basically wake up, head down to hospital and then come home and go straight to bed! Seriously.
My family doctor is not concerned with my blood pressure right now. It is still within the high normal range. Her concern would have been if it was this high for many years, then it would have been an issue. She acknowledged that I am going through a normal stressful period and that it's temporary. However, she was quick to prescribe anti-depressants to take the edge off my stress.......Um, nope. Not going there! She did say that her offer would always be there for that prescription, if I changed my mind. I'M NOT DEPRESSED! Yes, I have a full plate, but not depressed. So, I obviously declined. In the meantime she said that weight loss (which I've had lots these past 3 weeks) and exercise reduces high blood pressure. So, that night, on my way home I went to my brother's house and with his wife, the three of us went for a walk. It was great releasing that tension in my chest and I must say, my heart wasn't racing like I thought it would. Doctor recommended, that during the day, when Tony sleeps to just go outside and get some fresh air and walk around the block. Great advice! I'm going that route for now. In the meantime, my blood pressure has gone down!!! Horray!
Tony's brochoscopy (not sure of spelling) That's a lung scope.
Kind of like an endoscopy. The porters were one hour late getting him to the prep room. Everyone, doctors, nurses, secretary, kept putting stat on this delivery. Too funny. Off we went with the fan man. They numbed his throat and did the procedure. Doctor came out to talk to me and in his opinion, lungs looked normal. Nothing really jumped out at him to say there might be a problem. Good news. The sample they took takes 48 hours to come back. (that's today) Instructions were no food or drinks till 1:30pm. Poor Tony was starving! Like a baby, kept begging me for an ice cube or water or anything! Too funny. By 1:15 I gave in. My brother brought him sausage links and bacon and hash browns to eat for breakfast at 7:30am, which he couldn't eat. Poor Tony. So I warmed it up and then he barely ate. (After all that begging)
His day on Tuesday wasn't the greatest. His breathing was difficult. Needed his oxygen mask too often, in my opinion. He was exhausted. No energy. Coughing up phlegm and blood. Nurses said the Blood was from the procedure. He did have a much better sleep on Tuesday night.
Wednesday
As soon as I stepped out of the elevator, the nurse practitioner swarmed me to say how great Tony looked and how great he was doing. They all care for Tony on this floor. All the nurses know me as I'm always there. Great support. Great staff. (except the one who yanked his nephrostomy out)
When I walked in the room, it was clear to me what she meant. He looked like my Tony that I know and love. Yesterday, was a good day......
"I'm thinking he can go home this Friday" seems to be the quote of the day. By nurses and doctors. We shall see how his day is today......
Have a great one everybody!
Mary
I went to my family doctor Tuesday afternoon. I'm truly exhausted. We are starting week 4 of hospitals. I cannot believe how fast time is going by. I basically wake up, head down to hospital and then come home and go straight to bed! Seriously.
My family doctor is not concerned with my blood pressure right now. It is still within the high normal range. Her concern would have been if it was this high for many years, then it would have been an issue. She acknowledged that I am going through a normal stressful period and that it's temporary. However, she was quick to prescribe anti-depressants to take the edge off my stress.......Um, nope. Not going there! She did say that her offer would always be there for that prescription, if I changed my mind. I'M NOT DEPRESSED! Yes, I have a full plate, but not depressed. So, I obviously declined. In the meantime she said that weight loss (which I've had lots these past 3 weeks) and exercise reduces high blood pressure. So, that night, on my way home I went to my brother's house and with his wife, the three of us went for a walk. It was great releasing that tension in my chest and I must say, my heart wasn't racing like I thought it would. Doctor recommended, that during the day, when Tony sleeps to just go outside and get some fresh air and walk around the block. Great advice! I'm going that route for now. In the meantime, my blood pressure has gone down!!! Horray!
Tony's brochoscopy (not sure of spelling) That's a lung scope.
Kind of like an endoscopy. The porters were one hour late getting him to the prep room. Everyone, doctors, nurses, secretary, kept putting stat on this delivery. Too funny. Off we went with the fan man. They numbed his throat and did the procedure. Doctor came out to talk to me and in his opinion, lungs looked normal. Nothing really jumped out at him to say there might be a problem. Good news. The sample they took takes 48 hours to come back. (that's today) Instructions were no food or drinks till 1:30pm. Poor Tony was starving! Like a baby, kept begging me for an ice cube or water or anything! Too funny. By 1:15 I gave in. My brother brought him sausage links and bacon and hash browns to eat for breakfast at 7:30am, which he couldn't eat. Poor Tony. So I warmed it up and then he barely ate. (After all that begging)
His day on Tuesday wasn't the greatest. His breathing was difficult. Needed his oxygen mask too often, in my opinion. He was exhausted. No energy. Coughing up phlegm and blood. Nurses said the Blood was from the procedure. He did have a much better sleep on Tuesday night.
Wednesday
As soon as I stepped out of the elevator, the nurse practitioner swarmed me to say how great Tony looked and how great he was doing. They all care for Tony on this floor. All the nurses know me as I'm always there. Great support. Great staff. (except the one who yanked his nephrostomy out)
When I walked in the room, it was clear to me what she meant. He looked like my Tony that I know and love. Yesterday, was a good day......
"I'm thinking he can go home this Friday" seems to be the quote of the day. By nurses and doctors. We shall see how his day is today......
Have a great one everybody!
Mary
Monday, September 9, 2013
The Fan Man
This morning we saw his regular oncologist who was back from vacation. Looks like the plan is to heal this pneumonia first before moving forward. Also, his legs and feet are really swollen. Can't fit into his slippers. One doctor prescribed another type of medication to remove fluid from skin. I hope it works. It will be administered all night long tonight.
Also, word is that one cycle of chemo is done every 4-5 weeks. He will most likely have to wait until that 4th week to begin his chemo cycle from Day 1 again. I'm hoping that they can do it on week 3 as he did not receive the full dosage the first time. They say his bone marrow needs healing time before the next cycle. Time will tell. They will assess closer to the time. They will discuss further with PMH on their thoughts.
Back to this morning, if you recall, that nurse who yanked his nephrostomy on that Friday night.....well we were hoping that this morning they would "repair" it. Poor Tony has been laying down in a bed with kidney fluids leaking on him....not nice. Everyone said it was ok, so we go with the flow. Three doctors later and reminding the nurses where the heck the team in radiology was to repair this thing, it finally came to an end. Can't fix it. Have to redo it.....YIKES! So at 3pm today down he went to radiology. Now he's been sweating from the shoulders up for months now. For his hospital stay, a family member bought a bright yellow battery operated fan. It goes with him everywhere. Sits on his belly and blows in his face. Cools him down. When we got to the department (and you see the same staff members over and over) they said "hey! it's the fan man!" Too funny!
They had to insert a thicker tube than the existing one. YIKES! Remember people, he's awake for this procedure, laying on his huge belly totally uncomfortable! Thank goodness I had friends there to defer the tension during this procedure. (45 minutes) As he came out and saw us, he said it was the worst, most painful thing he's had to go through since this entire journey. Even tonight he said that one kidney was bothering him. Apparently, kidneys are very sensitive.
He ate his dinner at the edge of the bed sitting up. It is encouraged that any fluids or food be taken in an upright position.
Tomorrow they are doing a broncho something. Can't remember. 9am They go into his throat, down to the lungs and take a sample. It will tell them what type of infection he has. Making sure they are giving him the right antibiotics to make him well fast!
Feeling those positive vibes from everyone today!
Thank you!
Nite everyone.
Also, word is that one cycle of chemo is done every 4-5 weeks. He will most likely have to wait until that 4th week to begin his chemo cycle from Day 1 again. I'm hoping that they can do it on week 3 as he did not receive the full dosage the first time. They say his bone marrow needs healing time before the next cycle. Time will tell. They will assess closer to the time. They will discuss further with PMH on their thoughts.
Back to this morning, if you recall, that nurse who yanked his nephrostomy on that Friday night.....well we were hoping that this morning they would "repair" it. Poor Tony has been laying down in a bed with kidney fluids leaking on him....not nice. Everyone said it was ok, so we go with the flow. Three doctors later and reminding the nurses where the heck the team in radiology was to repair this thing, it finally came to an end. Can't fix it. Have to redo it.....YIKES! So at 3pm today down he went to radiology. Now he's been sweating from the shoulders up for months now. For his hospital stay, a family member bought a bright yellow battery operated fan. It goes with him everywhere. Sits on his belly and blows in his face. Cools him down. When we got to the department (and you see the same staff members over and over) they said "hey! it's the fan man!" Too funny!
They had to insert a thicker tube than the existing one. YIKES! Remember people, he's awake for this procedure, laying on his huge belly totally uncomfortable! Thank goodness I had friends there to defer the tension during this procedure. (45 minutes) As he came out and saw us, he said it was the worst, most painful thing he's had to go through since this entire journey. Even tonight he said that one kidney was bothering him. Apparently, kidneys are very sensitive.
He ate his dinner at the edge of the bed sitting up. It is encouraged that any fluids or food be taken in an upright position.
Tomorrow they are doing a broncho something. Can't remember. 9am They go into his throat, down to the lungs and take a sample. It will tell them what type of infection he has. Making sure they are giving him the right antibiotics to make him well fast!
Feeling those positive vibes from everyone today!
Thank you!
Nite everyone.
Sunday, September 8, 2013
A very rough morning.
Overnight he usually emails me. My overnight crew do as well. It makes me feel better when I wake up all anxious, to know that things are going along ok. But nothing in the early morning hours. I started panicking. Tony did send a note saying all ok and that he had 2% left of battery life. But he always says he's ok, even when he's not! So, the anxiety began again.
When I got there he was wheezing terribly and cackling sounds in lungs. His eyes looked red and feverish. But no fever. Coughed a bit of phlegm. Doctors ordered the crew to come to his room for an xray. (we never did get results!) A lung specialist came by to see him. An ICU rep came by to see if he needed to be in ICU for a bit. (no) And someone came by to take blood to check out the acid levels or something. Can't remember. To rule out a blood infection as well. Not sure why they're doing this as he has no fever. Must remember to ask the doctor tomorrow. Around 11am he fell asleep for about 1.5 hours. Obviously a rest he so needed because when he awoke he was more alert and with it. Breathing was a bit better. Oh, I forgot! The doctors ordered two units of blood for his transfusion overnite and in the morning they gave him a diaretic to get rid of fluids. Well, it all worked. Just in time for his mom's visit, cause he was great!
No appetite all day long. Around 5ish he had some of his mom's lunch and then around 8 had more food from family members. YAY. Appetite is back. Good sign.
Plan is to heal from this pneumonia and return to day 1 of chemo.
Left him alone for the night. We all need to rest.
All of us!
Nite.
When I got there he was wheezing terribly and cackling sounds in lungs. His eyes looked red and feverish. But no fever. Coughed a bit of phlegm. Doctors ordered the crew to come to his room for an xray. (we never did get results!) A lung specialist came by to see him. An ICU rep came by to see if he needed to be in ICU for a bit. (no) And someone came by to take blood to check out the acid levels or something. Can't remember. To rule out a blood infection as well. Not sure why they're doing this as he has no fever. Must remember to ask the doctor tomorrow. Around 11am he fell asleep for about 1.5 hours. Obviously a rest he so needed because when he awoke he was more alert and with it. Breathing was a bit better. Oh, I forgot! The doctors ordered two units of blood for his transfusion overnite and in the morning they gave him a diaretic to get rid of fluids. Well, it all worked. Just in time for his mom's visit, cause he was great!
No appetite all day long. Around 5ish he had some of his mom's lunch and then around 8 had more food from family members. YAY. Appetite is back. Good sign.
Plan is to heal from this pneumonia and return to day 1 of chemo.
Left him alone for the night. We all need to rest.
All of us!
Nite.
Saturday, September 7, 2013
Non c'e due senza il tre
Translation: There is no two without three
So here's my logic. Three times he had his stem cell harvesting appointment and three times it got cancelled.
Back in March it was cancelled because of the testicle problem.
Back in May/June because of the lymph nodes.
And yesterday we found out that it was scheduled a third time for mid September. Well, guess what, he now has pneumonia.
So, I believe that this is our last brick wall towards getting those stem cells harvested.
Yesterday morning when I first saw him, his breathing was not the same. He felt warm to the touch from head to toe. I hunted the doctor down on the floor and he listened to his lungs and guess what? Fluid buildup. But, no fever. So off to CT scan (not xray) he goes to get confirmation. Both lower lungs show the infection. Do we stop chemo? is the question of the hour.
Well, since chemo kills his immunity, it seems pretty obvious, but we still had one doctor seriously thinking about doing both chemo and antibiotics.....in the end, it was stopped in the afternoon :(
His blood work did show that he was responding to the chemo, which is good news. He only received 50% of the required dosage. So the plan is to re assess him in the next couple of days and decide then.
In the meantime, my stress levels have been up the roof. Today just did me in. My blood pressure was 151/98. Not good. What scared me was my lightheadedness. I decided to go downstairs to emergency to check it out. While in emergency, Robert texts me to say that he spilled water and the nurse was changing him and she pulled at his nephrostomy cord and broke the connection!!!!! OMG What else can go wrong today. It was leaking all over him. Back upstairs I go to check things out. This is a direct open line to his kidney. (left side) Not exactly a good thing to happen. Open wounds like infections. Radiology can't come till Monday so they consulted with urologist and they did a makeshift pouch to collect urine. Not impressed.
In the meantime, it was time for me to go home. One of Tony's oncologists on call noticed my name in Emergency and called my cell to check up on me! Awe, how sweet is that? At 10:00pm!
God bless you Dr. A.
I am glad to say that I had the best sleep and rest of my life. With the help of a little pill.
The night shift crew (Paola & Fior) watching Tony reported that he was coughing up lots of phlegm and was breathing better.
Still needing those prayers everyone.
Mary
So here's my logic. Three times he had his stem cell harvesting appointment and three times it got cancelled.
Back in March it was cancelled because of the testicle problem.
Back in May/June because of the lymph nodes.
And yesterday we found out that it was scheduled a third time for mid September. Well, guess what, he now has pneumonia.
So, I believe that this is our last brick wall towards getting those stem cells harvested.
Yesterday morning when I first saw him, his breathing was not the same. He felt warm to the touch from head to toe. I hunted the doctor down on the floor and he listened to his lungs and guess what? Fluid buildup. But, no fever. So off to CT scan (not xray) he goes to get confirmation. Both lower lungs show the infection. Do we stop chemo? is the question of the hour.
Well, since chemo kills his immunity, it seems pretty obvious, but we still had one doctor seriously thinking about doing both chemo and antibiotics.....in the end, it was stopped in the afternoon :(
His blood work did show that he was responding to the chemo, which is good news. He only received 50% of the required dosage. So the plan is to re assess him in the next couple of days and decide then.
In the meantime, my stress levels have been up the roof. Today just did me in. My blood pressure was 151/98. Not good. What scared me was my lightheadedness. I decided to go downstairs to emergency to check it out. While in emergency, Robert texts me to say that he spilled water and the nurse was changing him and she pulled at his nephrostomy cord and broke the connection!!!!! OMG What else can go wrong today. It was leaking all over him. Back upstairs I go to check things out. This is a direct open line to his kidney. (left side) Not exactly a good thing to happen. Open wounds like infections. Radiology can't come till Monday so they consulted with urologist and they did a makeshift pouch to collect urine. Not impressed.
In the meantime, it was time for me to go home. One of Tony's oncologists on call noticed my name in Emergency and called my cell to check up on me! Awe, how sweet is that? At 10:00pm!
God bless you Dr. A.
I am glad to say that I had the best sleep and rest of my life. With the help of a little pill.
The night shift crew (Paola & Fior) watching Tony reported that he was coughing up lots of phlegm and was breathing better.
Still needing those prayers everyone.
Mary
Thursday, September 5, 2013
Chemo has begun
It was started yesterday, September 4th at 11am.
The prep work before was intense. Leading up to the actual delivery was even worse!
They prepped him with lots of hydration, anti nausea and Ativan to relax. By the time it was all hooked, he was sleeping peacefully.
I was there with his sister and afterwards my sister-in-law joined me in a meeting basically informing us of what to expect. Very informative. Actually put me at ease. All the side effects of chemo are all taken care of with meds to combat it.
It will be a two week process. Four days of chemo, 7th day will be his lowest immunity and the second week will be getting better. Not sure if and when they plan on releasing him. I personally think he still needs to be monitored closely.
Tony slept most of the day. The anti nausea made him dopey and slurring his words.
Today, I believe these past two weeks finally caught up with me! I'm exhausted and have lots of work to do with the office that has just simply been put aside. Priorities. I took advantage of his sister coming over at 1 and I basically went home to sleep for a bit and am currently getting caught up on stuff. He will always have someone by his side during this chemo treatment. We are taking turns watching him and getting anything that he needs.
This morning he had a cough. He wanted to get up and was encouraged to walk down the hall and back! That was good. Really good. But was spent afterwards. His breathing continues to be difficult with walking and talking. My friend came in the morning and gave his feet and legs a great massage! She even massaged his neck and shoulders. He slept through most of it....LOL
Anyways, I'm going to get cracking on much needed bookkeeping stuff for the office and then heading back to the hospital.
Keep those prayers and wishes going everyone!
The prep work before was intense. Leading up to the actual delivery was even worse!
They prepped him with lots of hydration, anti nausea and Ativan to relax. By the time it was all hooked, he was sleeping peacefully.
I was there with his sister and afterwards my sister-in-law joined me in a meeting basically informing us of what to expect. Very informative. Actually put me at ease. All the side effects of chemo are all taken care of with meds to combat it.
It will be a two week process. Four days of chemo, 7th day will be his lowest immunity and the second week will be getting better. Not sure if and when they plan on releasing him. I personally think he still needs to be monitored closely.
Tony slept most of the day. The anti nausea made him dopey and slurring his words.
Today, I believe these past two weeks finally caught up with me! I'm exhausted and have lots of work to do with the office that has just simply been put aside. Priorities. I took advantage of his sister coming over at 1 and I basically went home to sleep for a bit and am currently getting caught up on stuff. He will always have someone by his side during this chemo treatment. We are taking turns watching him and getting anything that he needs.
This morning he had a cough. He wanted to get up and was encouraged to walk down the hall and back! That was good. Really good. But was spent afterwards. His breathing continues to be difficult with walking and talking. My friend came in the morning and gave his feet and legs a great massage! She even massaged his neck and shoulders. He slept through most of it....LOL
Anyways, I'm going to get cracking on much needed bookkeeping stuff for the office and then heading back to the hospital.
Keep those prayers and wishes going everyone!
Tuesday, September 3, 2013
We need your prayers this week
Tony's kidney function has improved since his procedure. He continues to be so brave and strong willed, just like we know him. Always positive.
This morning he was coughing up some phlegm which was concerning the doctors. They immediately got an x-ray done of nasal and lungs to rule out pneumonia. All good with the results.
They have decided to go ahead with the chemo treatment. Their concern right now is his current health and beginning the chemo at a weak state. But we need these lymph nodes shrunk! He will be monitored big time! It will be administered in the morning for 24 hours for 4 straight days. He will always have a family member present with him during this time.
We ask that friends and family respect our wishes with regards to no visitors.
We will need your prayers and blessings this week.
Customers of Delor, please be patient as my brother and our two sons help to continue to run the business during this stressful time for us.
God bless.
Good night.
Mary
This morning he was coughing up some phlegm which was concerning the doctors. They immediately got an x-ray done of nasal and lungs to rule out pneumonia. All good with the results.
They have decided to go ahead with the chemo treatment. Their concern right now is his current health and beginning the chemo at a weak state. But we need these lymph nodes shrunk! He will be monitored big time! It will be administered in the morning for 24 hours for 4 straight days. He will always have a family member present with him during this time.
We ask that friends and family respect our wishes with regards to no visitors.
We will need your prayers and blessings this week.
Customers of Delor, please be patient as my brother and our two sons help to continue to run the business during this stressful time for us.
God bless.
Good night.
Mary
Sunday, September 1, 2013
Two procedures: Picc line and Nephrostomy
Wasn't much to report yesterday (Saturday). We had a few visitors and passed our day doing nothing. I have found a comfy way to fall asleep in a chair, leaning on the window sill with a pillow. Not bad! I only need power naps to keep me going.
Today, however, was very stressful for both of us I'm sure! Tony has been so brave during this entire hospital stay. My brother and sister-in-law came to keep me company during this procedure. Took 2 hours and 45 minutes!!! Waiting is so hard. He had a picc line done on his arm with the help of x-rays and he had both his kidneys done with a procedure called nephrostomy. Awake!!! Yikes! He now is fashioning a pouch on both sides collecting "liquids". The doctor this morning said his potassium was high so they gave him something for that. They are on it, making sure all tests are done and monitored. Tomorrow morning let's see what the blood work shows. We need these kidneys to heal in order to initiate the chemo. Looks like it's been delayed another two days because of his kidneys. In the meantime, his breathing continues to be laboured and passing urine naturally, still isn't happening........
I know we have lots of people praying and rooting for him! Keep them coming people!
An early nite for me.
Looking forward to lots of zzzzzzzzzz.
Friday, August 30, 2013
The human plumbing system
Another long day. Minimal rest for Tony.
They did another ultra sound and they sent him to another hospital for his MRI via ambulance. Nice young boys took him for a short drive to Humber River Finch. Either they are graduating young or we are getting old!!!!!!
MRI showed nothing interfering the bladder function from the spine.
However, the ultra sound did show something.
I'd like to quote the doctor. "I'm sure your wife has used this phrase with you many times, so I'll just come out and say it. You're full of shit!" So, this evening we dealt with the human plumbing system! Enough said about this topic. There's only so much I can repeat, so let's just leave it at that.
One thing though, I must say, one needs to remember to follow up on everything. Everyone should be on top of things as a patient. When the doctor came in to discuss his situation and give the MRI results, we had to ask about the results for the ultra sound. He left the room to check it and came back with his bowels being full.....Scary how if we didn't ask, would we have gotten an answer.....scary. We really need to stay on top of things and ask questions and be informed with what's going on and what options and possibilities are out there. We have so many doctors but I wonder if that's a good thing? Kind of makes you go "hummmmm".
Anyways, I do like this doctor. He also recommended a kidney specialist. His kidney function continues to worsen. (not kidney failure stage yet) The specialist came in and basically said she suspects kidneys are damaged from a reaction to the die they used for the CT scan. He's had it before. Although it's been said to not use the die with Multiple Myeloma patients. They even gave him a red wrist band that says allergy. I'm pretty sure it was okayed to use last week. But she thinks he had reaction. Not allergic, but damaged. She also says there's a blockage and whether it's the lymph nodes or "full" bowels, time will tell. Chemo will shrink the lymph nodes and an enema will empty the bowels. She feels that this kidney problem is not related to the myeloma (good news) and that he will recover. In the meantime, she feels that it's a good idea for a nephrostomy prior to chemo. Which is a bypass of the kidneys. Which means they will puncture both kidneys and Tony will have a bag for filtering or emptying....can't remember. Way too much to learn for today!
This will be done on Sunday as well as the pick line on the arm for chemo treatment. The doctor suspects that there will be another delay in chemo treatment till this human plumbing system gets better.....He was saying perhaps Thursday.....But, we shall see Tuesday morning when they are all back from the long weekend. In the meantime, we've been told that they will be checking in on Tony's progress via the computer and emails and to rest assured that a qualified doctor will be noting his progress during the weekend. I'm glad he's staying at the hospital. He really needs to be monitored.
Oh, before I left him at the hospital, he did pass urine on his own. Already a good sign!
Off to bed I go......very tired.
Mary
They did another ultra sound and they sent him to another hospital for his MRI via ambulance. Nice young boys took him for a short drive to Humber River Finch. Either they are graduating young or we are getting old!!!!!!
MRI showed nothing interfering the bladder function from the spine.
However, the ultra sound did show something.
I'd like to quote the doctor. "I'm sure your wife has used this phrase with you many times, so I'll just come out and say it. You're full of shit!" So, this evening we dealt with the human plumbing system! Enough said about this topic. There's only so much I can repeat, so let's just leave it at that.
One thing though, I must say, one needs to remember to follow up on everything. Everyone should be on top of things as a patient. When the doctor came in to discuss his situation and give the MRI results, we had to ask about the results for the ultra sound. He left the room to check it and came back with his bowels being full.....Scary how if we didn't ask, would we have gotten an answer.....scary. We really need to stay on top of things and ask questions and be informed with what's going on and what options and possibilities are out there. We have so many doctors but I wonder if that's a good thing? Kind of makes you go "hummmmm".
Anyways, I do like this doctor. He also recommended a kidney specialist. His kidney function continues to worsen. (not kidney failure stage yet) The specialist came in and basically said she suspects kidneys are damaged from a reaction to the die they used for the CT scan. He's had it before. Although it's been said to not use the die with Multiple Myeloma patients. They even gave him a red wrist band that says allergy. I'm pretty sure it was okayed to use last week. But she thinks he had reaction. Not allergic, but damaged. She also says there's a blockage and whether it's the lymph nodes or "full" bowels, time will tell. Chemo will shrink the lymph nodes and an enema will empty the bowels. She feels that this kidney problem is not related to the myeloma (good news) and that he will recover. In the meantime, she feels that it's a good idea for a nephrostomy prior to chemo. Which is a bypass of the kidneys. Which means they will puncture both kidneys and Tony will have a bag for filtering or emptying....can't remember. Way too much to learn for today!
This will be done on Sunday as well as the pick line on the arm for chemo treatment. The doctor suspects that there will be another delay in chemo treatment till this human plumbing system gets better.....He was saying perhaps Thursday.....But, we shall see Tuesday morning when they are all back from the long weekend. In the meantime, we've been told that they will be checking in on Tony's progress via the computer and emails and to rest assured that a qualified doctor will be noting his progress during the weekend. I'm glad he's staying at the hospital. He really needs to be monitored.
Oh, before I left him at the hospital, he did pass urine on his own. Already a good sign!
Off to bed I go......very tired.
Mary
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