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
Saturday, September 7, 2013
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
Thursday, August 29, 2013
I'm not a writer
I wish I was a clever writer. Don't know how to make my blogs more interesting!
It's after midnight and I'm exhausted, so bear with me on this blog if I just don't make sense.
Yesterday...
I can't remember yesterday. I swear my brain is mush right now.
Yesterday Tony was exhausted. I had to leave him for work related things and left him with him mom and dad. God bless parents. They mean well. They mean well. They mean well.
Mom was catering to his every need and more. To the point of zero sleep and rest. I was told to rush back so he could rest. They mean well. They mean well. They mean well.
These adorable seniors waited till I got back and then left and then Tony slept and rested.
Not much news re doctors. His hemoglobin continues to slowly drop. His breathlessness is always there. Even talking for long periods, he gets winded. Forget getting up for tests, etc. Those physical activities really tire him out. I think he's had enough of the hospital stay and definitely hospital food. God bless parents and a special sister-in-law for home cooked meals. Forget Tony, "I" could get used to this!
His bladder continues to be a mystery. Ultra sounds still show no problems.
Today.
Today was another long day. He did rest up for the most part. They moved him up one floor. Much better room. Nicer nurses on this floor. Oh, and the most important part! He finally got a TV! Woohoo. A room that has a TV that works! LOL $85 for 7 days. Holy cow! I shouldn't complain. We are so grateful to live in Ontario where the health system pays for everything. Cannot even imagine how much this week's experience would cost. No idea. Since August 19 he's had 1 MRI, 2 biopsies, 2 CT scans, numerous ultra sounds and x-rays and 1 Doppler test. I'm sure I'm forgetting more. We're talking serious $$$$$
Today they informed us that the MRI is Friday morning and he will be ambulance driven to Finch location for this procedure. As I type this blog, he is getting 2 more units of blood to help with the breathlessness.
Two people keep coming to his room to do exercise and assessment of his physical activity and how much he can do. They made him walk up and down the hallway one day, but want to watch him do stairs. Somehow, he convinced them to go away! If you know Tony, he has a way of convincing you he's right!
I look forward to them coming back tomorrow!
We were told that his kidney function is getting worse from the lab results. So, our worse case scenario will be a bypass from the kidney while he gets the chemo. Chemo will be rough on his kidney so they may have to do this. I guess we'll find out after the MRI results. They still have to rule out a few things. Over the weekend he will be getting a pick line on his arm for the chemo and then eventually for harvesting. YUP, he still qualifies and they still plan on doing that. We are staying focused on that. He can do it! He can do it! He is a strong man!
Nite everyone. I'm really toast now.
Later.
Mary
It's after midnight and I'm exhausted, so bear with me on this blog if I just don't make sense.
Yesterday...
I can't remember yesterday. I swear my brain is mush right now.
Yesterday Tony was exhausted. I had to leave him for work related things and left him with him mom and dad. God bless parents. They mean well. They mean well. They mean well.
Mom was catering to his every need and more. To the point of zero sleep and rest. I was told to rush back so he could rest. They mean well. They mean well. They mean well.
These adorable seniors waited till I got back and then left and then Tony slept and rested.
Not much news re doctors. His hemoglobin continues to slowly drop. His breathlessness is always there. Even talking for long periods, he gets winded. Forget getting up for tests, etc. Those physical activities really tire him out. I think he's had enough of the hospital stay and definitely hospital food. God bless parents and a special sister-in-law for home cooked meals. Forget Tony, "I" could get used to this!
His bladder continues to be a mystery. Ultra sounds still show no problems.
Today.
Today was another long day. He did rest up for the most part. They moved him up one floor. Much better room. Nicer nurses on this floor. Oh, and the most important part! He finally got a TV! Woohoo. A room that has a TV that works! LOL $85 for 7 days. Holy cow! I shouldn't complain. We are so grateful to live in Ontario where the health system pays for everything. Cannot even imagine how much this week's experience would cost. No idea. Since August 19 he's had 1 MRI, 2 biopsies, 2 CT scans, numerous ultra sounds and x-rays and 1 Doppler test. I'm sure I'm forgetting more. We're talking serious $$$$$
Today they informed us that the MRI is Friday morning and he will be ambulance driven to Finch location for this procedure. As I type this blog, he is getting 2 more units of blood to help with the breathlessness.
Two people keep coming to his room to do exercise and assessment of his physical activity and how much he can do. They made him walk up and down the hallway one day, but want to watch him do stairs. Somehow, he convinced them to go away! If you know Tony, he has a way of convincing you he's right!
I look forward to them coming back tomorrow!
We were told that his kidney function is getting worse from the lab results. So, our worse case scenario will be a bypass from the kidney while he gets the chemo. Chemo will be rough on his kidney so they may have to do this. I guess we'll find out after the MRI results. They still have to rule out a few things. Over the weekend he will be getting a pick line on his arm for the chemo and then eventually for harvesting. YUP, he still qualifies and they still plan on doing that. We are staying focused on that. He can do it! He can do it! He is a strong man!
Nite everyone. I'm really toast now.
Later.
Mary
Wednesday, August 28, 2013
Back to Hospital Emerg
Lots has happened and I just haven't had a chance to blog. Sorry followers. These past few days have been full of ups and downs of stuff. Stuff. Emotions, health conditions, work, doctor meetings, protocols and more.
So it all started on Sunday when Tony was not passing urine in normal quantity and frequency. This donkey of a husband of mine was convincing himself and me that it's ok because he wasn't drinking enough. He passed very little on Sunday throughout the day. Between 5pm Sunday and 5am Monday he didn't go once. On Monday morning he was speaking with a sticky tongue. I think we've all had that feeling in our lifetime. He was constantly sweating from the shoulders up. I did call telehealth in the middle of the night. Again, the donkey went against their wishes which were to go to hospital.
Finally, at 11am we left for the drive to Emergency.
At triage, after assessing him, he went from chair to bed in Intensive Care. Holy cow! A catheter was inserted and 600ml came out immediately. (this is a first, experience wise, for Tony) Poor Tony :(
Again, no fever. Gosh this seems like days and days ago. I'm trying to remember the events.
His oncologist came to visit him and she gave the doctor in emergency the Readers Digest version of what we've been going through and what he needs to order. They put an IV drip in him and antibiotics. They took blood and urine samples away for testing.
My concern was that they were doing exactly the same thing as last week to him with regards to tests. But, they consider this a new patient and they have to follow protocol and rule out starting back to square one. I get that now with a clear brain, but not at the time. My anxiety levels were getting extremely high. I called Princess Margaret Hospital for support with someone that I know. He was wonderful. Reassuring me that a plan is in motion and will be initiated once biopsy comes in to confirm their suspicions. He also said that after the first chemo, he still plans on harvesting Tony's stem cells....in about 3 weeks. So that means after all this, he isn't disqualified. WHEW! I'm thinking he needs to be at Princess Margaret and monitored more closely. Everyone says, he is a special case....never seen this happen before with multiple myeloma.
In the meantime, he spent the entire day there till they got a room for him around midnight. (thank you Fiorella for all that you've done! A wonderful sister-in-law)
Tuesday was a day full of doctors and questions and investigating.
Doctor ordered an ultrasound of bladder and an echo. All normally functioning.
At this point they are questioning a lesion in spine interfering with the flow of the bladder. They will have to take him to another hospital to do an MRI. (not sure yet when that will be)
The whole point of the biopsies on Friday was to restage Tony. So the results were in and delivered to us on Tuesday------mulitiple myeloma/plasmacytoma. No sign of a secondary cancer. WHEW!
So now the plan is ready to go, but they need to solve this urinary retention problem.
One doctor is not convinced that that's all it is. His symptoms are very similar to lymphoma. He's asking all kinds of questions, speaking to EVERYONE raising doubt and making sure that treatment is correct and the follow up be in a more timely manor and not like the last time allowing the nodes to double in size before they realized.
I am comforted knowing that he has about 5 doctors conferencing and making the right decisions.
What impresses me the most is my husband. He is asking all kinds of questions. An example is that he read somewhere about too much calcium gives you the shakes.....he's been taking tums for acid.....tums is calcium. He told the doctor and she walk away to check his chart and come back to him to say "ya, you might be on to something!" LOL His calcium numbers were slowly creeping up. He was just above a high/normal level. I think the number was 2.63. But, I guess we'll never really know what those violent shakes were all about last week, but in the meantime, NO MORE TUMS! no more shakes.
I had an amazing sleep last night and am ready for my day with Tony.
Off to Humber now.
More soon.
So it all started on Sunday when Tony was not passing urine in normal quantity and frequency. This donkey of a husband of mine was convincing himself and me that it's ok because he wasn't drinking enough. He passed very little on Sunday throughout the day. Between 5pm Sunday and 5am Monday he didn't go once. On Monday morning he was speaking with a sticky tongue. I think we've all had that feeling in our lifetime. He was constantly sweating from the shoulders up. I did call telehealth in the middle of the night. Again, the donkey went against their wishes which were to go to hospital.
Finally, at 11am we left for the drive to Emergency.
At triage, after assessing him, he went from chair to bed in Intensive Care. Holy cow! A catheter was inserted and 600ml came out immediately. (this is a first, experience wise, for Tony) Poor Tony :(
Again, no fever. Gosh this seems like days and days ago. I'm trying to remember the events.
His oncologist came to visit him and she gave the doctor in emergency the Readers Digest version of what we've been going through and what he needs to order. They put an IV drip in him and antibiotics. They took blood and urine samples away for testing.
My concern was that they were doing exactly the same thing as last week to him with regards to tests. But, they consider this a new patient and they have to follow protocol and rule out starting back to square one. I get that now with a clear brain, but not at the time. My anxiety levels were getting extremely high. I called Princess Margaret Hospital for support with someone that I know. He was wonderful. Reassuring me that a plan is in motion and will be initiated once biopsy comes in to confirm their suspicions. He also said that after the first chemo, he still plans on harvesting Tony's stem cells....in about 3 weeks. So that means after all this, he isn't disqualified. WHEW! I'm thinking he needs to be at Princess Margaret and monitored more closely. Everyone says, he is a special case....never seen this happen before with multiple myeloma.
In the meantime, he spent the entire day there till they got a room for him around midnight. (thank you Fiorella for all that you've done! A wonderful sister-in-law)
Tuesday was a day full of doctors and questions and investigating.
Doctor ordered an ultrasound of bladder and an echo. All normally functioning.
At this point they are questioning a lesion in spine interfering with the flow of the bladder. They will have to take him to another hospital to do an MRI. (not sure yet when that will be)
The whole point of the biopsies on Friday was to restage Tony. So the results were in and delivered to us on Tuesday------mulitiple myeloma/plasmacytoma. No sign of a secondary cancer. WHEW!
So now the plan is ready to go, but they need to solve this urinary retention problem.
One doctor is not convinced that that's all it is. His symptoms are very similar to lymphoma. He's asking all kinds of questions, speaking to EVERYONE raising doubt and making sure that treatment is correct and the follow up be in a more timely manor and not like the last time allowing the nodes to double in size before they realized.
I am comforted knowing that he has about 5 doctors conferencing and making the right decisions.
What impresses me the most is my husband. He is asking all kinds of questions. An example is that he read somewhere about too much calcium gives you the shakes.....he's been taking tums for acid.....tums is calcium. He told the doctor and she walk away to check his chart and come back to him to say "ya, you might be on to something!" LOL His calcium numbers were slowly creeping up. He was just above a high/normal level. I think the number was 2.63. But, I guess we'll never really know what those violent shakes were all about last week, but in the meantime, NO MORE TUMS! no more shakes.
I had an amazing sleep last night and am ready for my day with Tony.
Off to Humber now.
More soon.
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