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.
Thursday, October 31, 2013
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!
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