Tony's hospital visit was a good one yesterday. Finally, no tweaking with his blood work! YAY
All his numbers are in line. Hemoglobin is staying stable in the low 90s. Not good, but as long as it's stable, they're ok with that. Magnesium and potassium is ok. They even stopped his hydration with home care. However, this doesn't mean that he can STOP drinking!!! Nope. He must get 2-3 litres of fluid every day. That's difficult for healthy ones, imagine him. So, I continue to nag him, offering him a huge variety of beverages. I'm finding that when I put a straw in the drink, you drink more. Thank you for that tip, whoever you were.
They did find his pulse very high. 130. Should be around the 80 range. They are saying it's dehydration. I wonder if they'll be doing a test next week to figure that one out. It's been weeks that it's been high. In the meantime, he is taking his own pulse every 6-8 hours. It has dropped since yesterday.
After having a stem cell transplant, it is normal to be put on a maintenance plan with chemo to keep the cancer from coming back. Since he will be having another stem cell transplant within the three month range, they want to put him on maintenance plan to keep this cancer at bay. Guess what? Back on steroids!!!!! Instead of taking them 4 days on, 4 days off, it's only once a week. Tonight will be a high energy wired night with him......God help me! Plus they put him back on the Revlimed for 21 days on and 7 off. 15 mg, as opposed to the 25mg he was on. However, to get this particular drug, they have to apply again to get approval. Once the doctors take you off this medication, they don't usually allow you to go back on it. So, they are rewording the application to indicate that he is on maintenance and not treatment. Fingers crossed. In the meantime, the hospital "gave" him one month supply, till the application comes through. Should I be saying this? I guess they have free samples? This is that medication that cost $10,000 per month at 25mg. (21 Pills per month) Crazy expensive stuff.
So, that's all folks.
Tomorrow, Saturday is a Toronto Chapter Multiple Myeloma group meeting. I'm hoping to make it there and get more information on the Walk this coming June. I'm really hoping to break records in fund raising for this event. I will be soliciting for walkers and donations.....sorry everyone.
My next post will be about the Walk.
Good day everybody!
Friday, January 31, 2014
Thursday, January 23, 2014
Two weeks at home now
Tony continues to be extremely fatigued. He has no willpower. No appetite. No motivation. All he wants to do is sleep. Walking to the bathroom and back is equivalent to running a marathon. Well, according to him. I try to push, but I just cannot. I feel so bad. It's in his voice, mannerisms and face. He says eating a meal is like bugging someone to eat a full course meal, after they had a full course meal 10 minutes ago. His body needs time to heal. We have been fortunate so far (knock on wood) to all be healthy in our home. I'm listening to all the "nonna" advice. Don't forget to wear your hat, gloves and scarf. And I do, each and every time I walk out that door. Very Very Very Cold WINTER.
Today was a follow up appointment. His regular oncologist was having a very busy day and one of her colleagues came in to see us. I always wonder about these colleagues....students, experience, thoroughness, sensitivity, etc. Anyway, it was ok. We really didn't have any serious issues. However, he did persist on the fluid intake part. AN ONGOING ISSUE WITH HIM! All the blood work came back great except for magnesium. (they can give through the IV along with hydration) But, when they take his blood pressure, they take it sitting and then standing. It dropped about 20 points between the two reads. A sign of dehydration. Also, his pulse was about 110. (just found out today normal is 70-80) Oh man! Another sign of dehydration. He had home care coming every day to hydrate one litre and plus he drank over a litre during the day. We were told to record the amount of fluid intake so that we can monitor it better. So, another long day at Princess Margaret. He slept the entire time with me by his side, reading a book. (Mitch Albom's: The First Phone Call from Heaven) Appropriate for me at this time in my life. I miss my mom. So far, a good read.
We found out today that they are closing the "blue pod". The blue pod is where patients with picclines and hickman lines go to give blood for testing during clinic. It's open till 10am. Afterwards you have to go to Ambulatory. I was sad with that news. Not the closing part, but because Chemo Daycare needs more space. Chemo Daycare, where outpatients go for chemo treatment 6 days a week. They need more space. Breaks my heart to hear that. I keep hearing more and more stories of people I know, who know people with cancer, and so on. I know that as you get older, your circle of friends grow and people are getting older etc, but this is getting sad. Today was hectic in the lobby. People coming and going. Too much cancer out there. And this is just one hospital.
I'd like to quote my dad. "Con la morte, non ce rimedio . Abbasta che hai la salute, hai tutto."
(There is no remedy for death. As long as you have health, you have everything.)
Thursday, January 16, 2014
Follow Up appointment Post Stem Cell Transplant
Hemoglobin is at 93. Climbing on his own-good
White blood Cell count dropped, but still within the normal range 7.5
Creatinine is 103, but they think it's high because he's not drinking enough.
Platelets is 211
Overall the day went ok. He didn't need a blood transfusion. When the nurse checked his vital signs, I was surprised. Blood pressure was very low, 84/54 and his pulse was very high, 135.
Nurse said is was dehydration. She immediately ordered it for him. They have requested Homecare to come to the house to keep the hydration going. Not sure for how long. I'll find out when she comes tomorrow.
Oncologist came in to chat. She reminded us that his appetite and lack of taste is normal and not to worry. It will come back. She also mentioned that she still plans on doing a tandem transplant due to his aggressive type of myeloma. She reminded us that he almost didn't qualify for the transplant because they couldn't get it under control. She wants him to recover so that she can do another one within 3 months. (protocol is usually 3-6 months with a tandem) She says that the chemo before transplant (melphalan) knocked out, let's say, 90% of the cancer. The second one will knock out even more.
The sooner the better, to prolong the chances of it growing back.
The sooner the better for a longer remission with his multiple myeloma.
It's his best defense right now. "What if it doesn't work?" was never asked. We need to stay focused and beat this thing. Stay positive. Half the battle is attitude.
He had many doctors stumped throughout this past year and each and every "stump" he surprised everyone. He will do again!
I'm ready to fight!!!!!!!!!!!!!!!!!!!!!!!!!
BTW, Multiple Myeloma is doing a 5km walk on June 22. It begins at Princess Margaret Hospital in Toronto. We are inviting all family and friends to participate in this walk. We haven't signed up yet. SOON. Need to get a team name first. Text me any ideas you may have. I'm including a link for more information.
http://www.mm5kwalk.ca/
White blood Cell count dropped, but still within the normal range 7.5
Creatinine is 103, but they think it's high because he's not drinking enough.
Platelets is 211
Overall the day went ok. He didn't need a blood transfusion. When the nurse checked his vital signs, I was surprised. Blood pressure was very low, 84/54 and his pulse was very high, 135.
Nurse said is was dehydration. She immediately ordered it for him. They have requested Homecare to come to the house to keep the hydration going. Not sure for how long. I'll find out when she comes tomorrow.
Oncologist came in to chat. She reminded us that his appetite and lack of taste is normal and not to worry. It will come back. She also mentioned that she still plans on doing a tandem transplant due to his aggressive type of myeloma. She reminded us that he almost didn't qualify for the transplant because they couldn't get it under control. She wants him to recover so that she can do another one within 3 months. (protocol is usually 3-6 months with a tandem) She says that the chemo before transplant (melphalan) knocked out, let's say, 90% of the cancer. The second one will knock out even more.
The sooner the better, to prolong the chances of it growing back.
The sooner the better for a longer remission with his multiple myeloma.
It's his best defense right now. "What if it doesn't work?" was never asked. We need to stay focused and beat this thing. Stay positive. Half the battle is attitude.
He had many doctors stumped throughout this past year and each and every "stump" he surprised everyone. He will do again!
I'm ready to fight!!!!!!!!!!!!!!!!!!!!!!!!!
BTW, Multiple Myeloma is doing a 5km walk on June 22. It begins at Princess Margaret Hospital in Toronto. We are inviting all family and friends to participate in this walk. We haven't signed up yet. SOON. Need to get a team name first. Text me any ideas you may have. I'm including a link for more information.
http://www.mm5kwalk.ca/
Wednesday, January 15, 2014
Status Quo
Hi everyone,
Sorry, I haven't been blogging. It's because I AM TIRED!
We are ALL TIRED in this house. Cannot get enough sleep. Especially Tony.
He continues to battle with diarrhea. Just when he reaches 12 hours plus and we think it's gone, it comes back again. Getting food in him is very challenging. According to him it's disgusting. I'm really not that bad a cook! Really! His sense of smell and taste is just not right. He says foods have an aftertaste. A horrible aftertaste. Fluid intake is ok. Wish I could get more in him though. His meals consist of one bite of this, one bite of that. I'm eating all the leftovers. I am gaining weight, he is losing weight.
He has lost all his facial hair, including eyebrows. He looks special.
Tomorrow is a big day. We find out what the numbers show.
I promise to blog early evening.
Sorry, I haven't been blogging. It's because I AM TIRED!
We are ALL TIRED in this house. Cannot get enough sleep. Especially Tony.
He continues to battle with diarrhea. Just when he reaches 12 hours plus and we think it's gone, it comes back again. Getting food in him is very challenging. According to him it's disgusting. I'm really not that bad a cook! Really! His sense of smell and taste is just not right. He says foods have an aftertaste. A horrible aftertaste. Fluid intake is ok. Wish I could get more in him though. His meals consist of one bite of this, one bite of that. I'm eating all the leftovers. I am gaining weight, he is losing weight.
He has lost all his facial hair, including eyebrows. He looks special.
Tomorrow is a big day. We find out what the numbers show.
I promise to blog early evening.
Thursday, January 9, 2014
Home Sweet Home
We just got home around 8pm. I'm starving.....Tony has zero appetite. Nurses say it will be about 4-6 weeks before his appetite comes back to normal. I'm sitting here blogging as dinner is cooking.
We kept getting "yes you're going home" and "no, not until your bowel movements get more solid." His diarrhea was still active up till early this morning. Which means, the C Difficile is still active. In the past 12 hours he only had one episode. However, because there was an influenza outbreak on his floor, they released several patients who were very close to discharge to avoid this spreading. Hospital says to avoid seeing anyone sick, young children and avoid malls and busy places. This afternoon they gave him magnesium and potassium via IV. And then we went home.
We are all exhausted in this house. It's been a long 15 days. Tomorrow we will rest.
Thanks again everyone for all your messages and best wishes.
Please call us before visiting. Thx.
We kept getting "yes you're going home" and "no, not until your bowel movements get more solid." His diarrhea was still active up till early this morning. Which means, the C Difficile is still active. In the past 12 hours he only had one episode. However, because there was an influenza outbreak on his floor, they released several patients who were very close to discharge to avoid this spreading. Hospital says to avoid seeing anyone sick, young children and avoid malls and busy places. This afternoon they gave him magnesium and potassium via IV. And then we went home.
We are all exhausted in this house. It's been a long 15 days. Tomorrow we will rest.
Thanks again everyone for all your messages and best wishes.
Please call us before visiting. Thx.
Tuesday, January 7, 2014
Yay, getting better
At 5:43am Tony sent me an email telling me his throat is ALOT better. Pain rating was 2. (from an 8 a few days back) He shared that he was actually able to drink water at a fast rate. Sharing that it felt great drinking/swalling water. He will attempt soft foods today. YAY!
Hemoglobin was unchanged (good news)
White blood count is at 2.2 (normal is 4-11) YAY
Platelets is 28 (not so good-I believe this number needs to be over 100, can't remember)
Tomorrow will be a big day for numbers as the nurses said Wednesday should be his big turnaround day.
We are very happy with this news.
On a bad note, he's experiencing some bone pain because of the neupogen injections. Elbow and knee. He has been hitting that morphine button often for this pain now. But it's all expected. This is ok. Normal reactions.
Now we need to get this C-Difficile under control and get him out of isolation. Hopefully with more solid foods he can have a normal bowel movement to prove he's getting better with this.
What a pain visiting him all dressed up in mask, gown and gloves. Yes, I'm complaining....Very restricting attire.
We are still limiting vistors at this time.
Dress accordingly everyone......it's cold out there!
Thank you David for all the Quentin Tarantino movies on that chip! It worked on his TV. I do believe he had a full day Quentin marathon, all thanks to you!
And, thank you mom from Heaven. We all know this great news is because of you. I know it is.
Hemoglobin was unchanged (good news)
White blood count is at 2.2 (normal is 4-11) YAY
Platelets is 28 (not so good-I believe this number needs to be over 100, can't remember)
Tomorrow will be a big day for numbers as the nurses said Wednesday should be his big turnaround day.
We are very happy with this news.
On a bad note, he's experiencing some bone pain because of the neupogen injections. Elbow and knee. He has been hitting that morphine button often for this pain now. But it's all expected. This is ok. Normal reactions.
Now we need to get this C-Difficile under control and get him out of isolation. Hopefully with more solid foods he can have a normal bowel movement to prove he's getting better with this.
What a pain visiting him all dressed up in mask, gown and gloves. Yes, I'm complaining....Very restricting attire.
We are still limiting vistors at this time.
Dress accordingly everyone......it's cold out there!
Thank you David for all the Quentin Tarantino movies on that chip! It worked on his TV. I do believe he had a full day Quentin marathon, all thanks to you!
And, thank you mom from Heaven. We all know this great news is because of you. I know it is.
Sunday, January 5, 2014
Mouth & Throat Sores are bad
I visited Tony this morning. His mouth sore is the size of a toonie. Left side of tongue. It did look a wee bit better than yesterday. However, his swallowing continues to be very challenging. Words are slurred. Very hard to understand him. We mostly communicate via text messages.
When he took his oral medications, they just came right back up.
CANNOT SWALLOW ANYTHING! He has a morphine button to press whenever he needs relief from the pain in mouth and throat. Allowed to press it every five minutes.
And very fatigued.
Poor Tony.
Still in isolation. This bug he is fighting is called Clostridium Difficile. (C-Diff)
Today he received another unit of blood and another of platelets (with no premeds)
No reaction again.
They normally do blood work in the morning and tweak during the day. This evening they are doing a check, instead of waiting for the morning......hummmmm
I wonder why? Tony says to check hemoglobin and platelets.....but why check twice in one day?
On a positive note, he did a full shower and wasn't dizzy or weak. Kept up with the washing. Nurse disconnected him from his "pole" to shower freely. He does look good in the face. Facial and body hair is minimum. I imagine he will be losing a few pounds in the next couple of weeks to come :(
DAY 9
Hemoglobin 78
White blood count 0.1
Platelets 9
When he took his oral medications, they just came right back up.
CANNOT SWALLOW ANYTHING! He has a morphine button to press whenever he needs relief from the pain in mouth and throat. Allowed to press it every five minutes.
And very fatigued.
Poor Tony.
Still in isolation. This bug he is fighting is called Clostridium Difficile. (C-Diff)
Today he received another unit of blood and another of platelets (with no premeds)
No reaction again.
They normally do blood work in the morning and tweak during the day. This evening they are doing a check, instead of waiting for the morning......hummmmm
I wonder why? Tony says to check hemoglobin and platelets.....but why check twice in one day?
On a positive note, he did a full shower and wasn't dizzy or weak. Kept up with the washing. Nurse disconnected him from his "pole" to shower freely. He does look good in the face. Facial and body hair is minimum. I imagine he will be losing a few pounds in the next couple of weeks to come :(
DAY 9
Hemoglobin 78
White blood count 0.1
Platelets 9
Saturday, January 4, 2014
Isolation
Well, they found a "bug" in his stool. Apparently we all have it, but because his immunity is compromised, this bug excels. So, they moved him to a private room, in isolation. I didn't go visit as I still felt under the weather yesterday, so we decided it would be best I didn't go. Our eldest went with some food and clean clothes. He had to wear a mask, gloves and gown.
This morning he had a temperature of 97.7.
Hemoglobin is 81 (I'm sure he will need a transfusion tomorrow)
They began the Neupogin injections yesterday to stimulate stem cell growth.
I expect today will be his worst day.
He cannot keep food down.
I went to a FB support group and asked for some advice with regards to his sore mouth and throat.
Recommendations were baby food, ensure, biotene mouthwash, Kefir, Popsicles, clear soup, over cooked vegetables, "magic pink" (helped with numbing throat-lidocane). Good advice. Good support group.
I'm going to bring him some baby food today and see how that works. Tony is not cooperating with more information as to what they're doing for him. I need to see him.
Weather is warmer today. Only -13 LOL brrrrrr
Have a good one everybody.
No visitors for a bit please.
This morning he had a temperature of 97.7.
Hemoglobin is 81 (I'm sure he will need a transfusion tomorrow)
They began the Neupogin injections yesterday to stimulate stem cell growth.
I expect today will be his worst day.
He cannot keep food down.
I went to a FB support group and asked for some advice with regards to his sore mouth and throat.
Recommendations were baby food, ensure, biotene mouthwash, Kefir, Popsicles, clear soup, over cooked vegetables, "magic pink" (helped with numbing throat-lidocane). Good advice. Good support group.
I'm going to bring him some baby food today and see how that works. Tony is not cooperating with more information as to what they're doing for him. I need to see him.
Weather is warmer today. Only -13 LOL brrrrrr
Have a good one everybody.
No visitors for a bit please.
Thursday, January 2, 2014
Well, as expected, chemo effects are happening.
Tony's mouth is all sore and his throat is hurting him.
He didn't eat much today, as swallowing really hurts. Nurse asked him on a scale of 1-10 (10 being bad) he gave it a 4. They will give him something to relieve the pain. I must read up on it more tomorrow or speak to the nurse. I'm not attempting to type the word she said as I cannot spell it. (spell check isn't helping me) Not sure if hot or cold foods sooth it.
I'm beginning to feel under the weather today. Not sure if the -20 temperatures has anything to do with it or not.
It's cold out there!!!!!!!!!!!!!!!!!!!!!!!!!!!
For someone who's always HOT, I'm double layered with a turtle neck and loving it. Oh, and a scarf. Today, during my visit I wore a mask, just in case.
This morning his hemoglobin was 77. White blood count was 0.1. We need to limit visitors for a couple of days until this number climbs back up again. Platelets were 25. His weight has been pretty stable since first admitted. 1-3 pounds up and down.
The doctor ordered one unit of blood for a transfusion. Wait for it......no pre-meds. What is that? When I walked in, he was already hooked up and receiving it. The doctor felt that it wasn't necessary. Reactions are rare and not to worry as he was in a hospital and if it did, they would get things under control again. Well, let me tell you that I never left his side during the entire time. I did not want to witness a fourth shake attack. And, of course, as Tony said, no worries. Have faith in the doctor. No reactions this time. Whew.
Let's see what challenges face him tomorrow.
Let's see how I feel in the morning. I hope I don't get worse.
Goodnight. Stay warm Torontonians.
He didn't eat much today, as swallowing really hurts. Nurse asked him on a scale of 1-10 (10 being bad) he gave it a 4. They will give him something to relieve the pain. I must read up on it more tomorrow or speak to the nurse. I'm not attempting to type the word she said as I cannot spell it. (spell check isn't helping me) Not sure if hot or cold foods sooth it.
I'm beginning to feel under the weather today. Not sure if the -20 temperatures has anything to do with it or not.
It's cold out there!!!!!!!!!!!!!!!!!!!!!!!!!!!
For someone who's always HOT, I'm double layered with a turtle neck and loving it. Oh, and a scarf. Today, during my visit I wore a mask, just in case.
This morning his hemoglobin was 77. White blood count was 0.1. We need to limit visitors for a couple of days until this number climbs back up again. Platelets were 25. His weight has been pretty stable since first admitted. 1-3 pounds up and down.
The doctor ordered one unit of blood for a transfusion. Wait for it......no pre-meds. What is that? When I walked in, he was already hooked up and receiving it. The doctor felt that it wasn't necessary. Reactions are rare and not to worry as he was in a hospital and if it did, they would get things under control again. Well, let me tell you that I never left his side during the entire time. I did not want to witness a fourth shake attack. And, of course, as Tony said, no worries. Have faith in the doctor. No reactions this time. Whew.
Let's see what challenges face him tomorrow.
Let's see how I feel in the morning. I hope I don't get worse.
Goodnight. Stay warm Torontonians.
Wednesday, January 1, 2014
HAPPY HAPPY NEW YEAR EVERYONE!
Well, he did it. Stayed awake till that midnight hour. The hospital was a ghost town when I left at 12:30am. No one around, except nurses and security. (I did see the nurses drinking (?) and doing a midnight toast. I dare not ask what was in their glasses....
A couple of friends joined us for a few hours to keep us company which was appreciated and enjoyable.
They say, "keep going on with your normal life. Laughter is the best medicine".
Well, we do (for the most part) and we did (laugh that is).
This morning the nurses asked to keep visitors at minimum. He must wear a mask every time he walks out of his room. He has to drag his pole with IV everywhere he goes. It will be attached to him for his entire stay. Did I blog that he named it? Django, the "D" is silent. (he loves Quinten Tarantino!)
He did have a runny nose this morning, but as the day went on, it stopped.
All of his doctors at the clinics are all away for the holidays, so we haven't really seen any familiar faces during his stay, but they are all so nice. Genuine. Sincere. Awesome!
Feels like I should blog something inspirational, but I'm just too exhausted and can't think of anything right now.
Below is a photo taken last night, early evening. (cannot figure out how to turn photo!!!! )
HAPPY NEW YEAR EVERYONE!
Here's to a better year.
A couple of friends joined us for a few hours to keep us company which was appreciated and enjoyable.
They say, "keep going on with your normal life. Laughter is the best medicine".
Well, we do (for the most part) and we did (laugh that is).
This morning the nurses asked to keep visitors at minimum. He must wear a mask every time he walks out of his room. He has to drag his pole with IV everywhere he goes. It will be attached to him for his entire stay. Did I blog that he named it? Django, the "D" is silent. (he loves Quinten Tarantino!)
He did have a runny nose this morning, but as the day went on, it stopped.
All of his doctors at the clinics are all away for the holidays, so we haven't really seen any familiar faces during his stay, but they are all so nice. Genuine. Sincere. Awesome!
Feels like I should blog something inspirational, but I'm just too exhausted and can't think of anything right now.
Below is a photo taken last night, early evening. (cannot figure out how to turn photo!!!! )
HAPPY NEW YEAR EVERYONE!
Here's to a better year.
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