With a 2 hour time change needless to say I don't sleep much. After being with dad the day before, I went to see mom to let her know how he was doing. It's difficult trying not to upset someone and letting her know that as soon as he is up to it I would take her to see him. Dad had mentioned he didn't want mom up yet. I keep wondering if it was truly the fact that he didn't want her to see him like this, the fact that it would be difficult on her and with her condition, not a good thing, or if he was just concerned that it was a burden on me, which I kept informing him it wasn't.
Arriving at the hospital early in the morning, the first doctor I saw was the orthopedic surgeon. RUH is a training hospital so needless to say when the doctor's come around to visit, they bring students with them. After listening to him discuss dad's case with the student's, I asked some questions regarding the shoulder and the outcome. He stated to me that they could not do surgery and they were going to let it heal. They would start some physio on it and try to keep dad as comfortable as possible. I asked him about his vitals and the doctor stated that I would have to discuss this with the other doctor. Dad has other issues that are more pressing than the shoulder. What the hell did he mean by that? I looked at him and he said you will have to wait to discuss this with them.
Ok, so I go back to the nurses and ask who I need to speak with. They stated that there was a staff physician who was also looking after dad. Nice to find that out now. So, when do I get to talk to him? I was informed he would be in that morning. When dad would sleep, I would walk up and down the hallways and go and get coffee. Being on the 5th floor was probably a good thing for me as the stairwell to the main level was my opportunity to get rid of excess energy (or stress) and since the elevators took forever, it was the better choice.
The staff physician arrived and he went through the course of what was going on. He stated that his blood levels were still not good. They had transfused dad with 2 units already and had no idea where the blood was going. His hemoglobin was still down, the white cell count was still up and the cancer doctor would be in to consult as well today. His blood pressure continued to stay very low, and I remember being called late in the evening on this day by a nurse who stated that it was so low they were transfusing dad again.
When the doctor left the bedside I went over and spoke with him and asked him what dad's overall improvement was going to be here. He looked at me with this puzzled look, and stated to me "I think you know". I looked back at him and said "I'm not sure what you mean". He stated the arm was the least of their concerns right now. With his cancer, the issue of the blood and his vitals being low, you probably know. I broke down. The doctor came over to my side and stated he was sorry. I had to leave the room as I didn't want dad to see me.
The thoughts that run through your head at a time like this are overbearing to say the least. This is my dad and I don't want to lose him. I have so many things I still need to do with you and know about you. How can I take away all this pain. How can I help you get through this. Knowing in my mind that the chances of him ever going back to the suite were slim, the one thing I knew is if he got through this, he would be placed into a care home which then he would have better care.
They had given him a bed bath, and tried to move him into another position. Every time they moved him, he just cried out in pain. It is so heart wrenching to hear this but my hope was my strength would help him get through it. Although there were times that he yelled at me, I realize that it wasn't my daddy, and because I was there I would get the brunt of the pain he had to endure. However, when he was feeling not bad, his joking ways made us all laugh.
Realizing that when he received blood transfusions his BP would elevate to a level within the 90's over 60's, I knew deep in my heart things were not doing good. When the cancer doctor came in, he stated that they needed to try to get his levels back to some normalcy again, but I have to admit, Dr. Pearson was the only person who seemed to have any care in the world about my dad.
Dad didn't eat much, and when he did he threw it up. He asked me to give him his "snuff", and at this stage of the game, I didn't care what any of the hospital staff said. Dad deserved everything and anything he asked for.
Tuesday ended late for me, as I would stay by his bedside as much as possible. There is an unbinding love that is here and I have to thank my dad for giving me this.
Tuesday, December 7, 2010
October 11th, 2010 - The Flight Back
It's been a while since I have blogged and realize the need to continue, which was in the first place, for my children.
Thank goodness for such good friends, those who get you to an airport and then pick you up at an airport. So off we went to pick up dad's car so I wouldn't have to rely on anyone and then to the hospital. When I got to the hospital the first thing daddy stated was "what the hell are you doing here"? Nice welcome. Oh well, that's my dad! So you ask him the same question back. He informed me that he had gotten up to go to the bathroom and fell. He stated he yelled and pounded on the floor for about 20 minutes until someone heard him and got the staff to come up to the room. Gosh I wished I hadn't gone home on Saturday and stayed a few more days. The thought of him lying there with no one to help him made me feel so ill.
Because it was a holiday there were of course no doctor's. I spoke with the nurses in the intensive care unit that he was in, and they stated that his vitals were not well but I would have to wait until the next day to talk to the doctor. After asking what time they would be in, I knew the next morning would be an early one, but also was informed that I could come and go as I pleased.
Dad was receiving blood transfusions, his arm looked horrible, swollen and a bit bruised, and I knew he was in a lot of pain. Due to the CMML there was a need to be careful with the types of drugs they could give him, as he needed to continue his treatment of oral chemotherapy.
You do everything you can to help make people feel comfortable, but with his right arm shattered at the rotator cuff and his right leg and knee also giving him a lot of pain, it was difficult.
This however was the continuance of nightmares.
Thank goodness for such good friends, those who get you to an airport and then pick you up at an airport. So off we went to pick up dad's car so I wouldn't have to rely on anyone and then to the hospital. When I got to the hospital the first thing daddy stated was "what the hell are you doing here"? Nice welcome. Oh well, that's my dad! So you ask him the same question back. He informed me that he had gotten up to go to the bathroom and fell. He stated he yelled and pounded on the floor for about 20 minutes until someone heard him and got the staff to come up to the room. Gosh I wished I hadn't gone home on Saturday and stayed a few more days. The thought of him lying there with no one to help him made me feel so ill.
Because it was a holiday there were of course no doctor's. I spoke with the nurses in the intensive care unit that he was in, and they stated that his vitals were not well but I would have to wait until the next day to talk to the doctor. After asking what time they would be in, I knew the next morning would be an early one, but also was informed that I could come and go as I pleased.
Dad was receiving blood transfusions, his arm looked horrible, swollen and a bit bruised, and I knew he was in a lot of pain. Due to the CMML there was a need to be careful with the types of drugs they could give him, as he needed to continue his treatment of oral chemotherapy.
You do everything you can to help make people feel comfortable, but with his right arm shattered at the rotator cuff and his right leg and knee also giving him a lot of pain, it was difficult.
This however was the continuance of nightmares.
Monday, October 25, 2010
October 10, 2010
I arrived home late the evening of October 9th. Spending time with my children are moments I will cherish. I fell asleep on the couch and when I woke up the next morning it wasn't long when my phone rang and it showed "dad" was calling. I had no idea that a nightmare was about to begin.
I missed the call and phoned back immediately with no answer. Thinking he had gone to the bathroom, I waited 5 minutes and called again. There was still no answer. A few minutes later the phone rang. I didn't even think about the time change of 2 hours when the phone rang. Jet lag, or just shear exhaustion of running all week, it just didn't hit me. However when I said hello daddy, and it wasn't his voice, there's that split second you think it is a wrong number. However the voice was the cook from the assisted living home, and she stated that dad had fallen and was taken to the hospital. I knew it was bad because of her voice. If ever you have had that deepest fear, I think that is what overcame myself at that moment. I hung up, looked at my daughter and stated I needed to get home and would probably be back to catch another plane to get back home.
Who do you call? It is a long weekend in Canada and the only person I could think of who would be home was the old neighbour, however, I didn't have his phone number. Then the thought of did anyone call mom? Distraught starts to set in. Calling the hospital would give me no answers and I knew that. So the neighbour received my call and he was more than willing to go. The call back later was that he had shattered his shoulder in 3 places and was in a lot of pain. They were transferring him from St Paul's to RUH. I spoke to mom who I could tell in her voice I needed to be home. I scheduled my flight for the next day.
I missed the call and phoned back immediately with no answer. Thinking he had gone to the bathroom, I waited 5 minutes and called again. There was still no answer. A few minutes later the phone rang. I didn't even think about the time change of 2 hours when the phone rang. Jet lag, or just shear exhaustion of running all week, it just didn't hit me. However when I said hello daddy, and it wasn't his voice, there's that split second you think it is a wrong number. However the voice was the cook from the assisted living home, and she stated that dad had fallen and was taken to the hospital. I knew it was bad because of her voice. If ever you have had that deepest fear, I think that is what overcame myself at that moment. I hung up, looked at my daughter and stated I needed to get home and would probably be back to catch another plane to get back home.
Who do you call? It is a long weekend in Canada and the only person I could think of who would be home was the old neighbour, however, I didn't have his phone number. Then the thought of did anyone call mom? Distraught starts to set in. Calling the hospital would give me no answers and I knew that. So the neighbour received my call and he was more than willing to go. The call back later was that he had shattered his shoulder in 3 places and was in a lot of pain. They were transferring him from St Paul's to RUH. I spoke to mom who I could tell in her voice I needed to be home. I scheduled my flight for the next day.
Where to Begin - The week of October 2, 2010
So much has happened it is hard to know where to begin since the last blog.
Flying home to see mom and dad. It is such a joyous occasion, especially for me, but hard when you look at how thin and old they are getting. I don't feel any older, but the realization is there.
There will be a lot of personal thoughts in these next few blogs, basically for my children, in hopes that it helps understanding the true meaning of life.
It's always amazing how when I arrive at dad's, the first thing he says is you need to go see your mom. There is so much love he has for her. Something that is lost in the day and age, although every now and then I think I see it in a couple. Relationships are something you don't take for granted, perservere, listen, understand, communicate, compromise and love each other.
Instead, I talked with dad, went through all this paperwork with him, listened to him about how he wanted things done, and then said let's go see mom and go out and get some borsch!
He's so wobbly, and watching him go down the hallway with his walker I try to hide my tears. I never thought of or imagined my parents aging. Have I ever truly thanked them for being the best parents in the world to me?
I spend my days back and forth with both of them and with them both together with me. Talking to dad about going into a personal care home and getting it set up while I am home is agreeable to him. I also spoke to his cancer specialist, Dr. Pearson, who took over a 1/2 hour with me on the phone on Tuesday, listened to my concerns, answered my questions and who agreed to meet both dad and I on Thursday when he would go for another transfusion.
I took mom shopping for a day, dad out to play the slots and enjoy those things that neither of them can do on their own. We smile, laugh and enjoy all our time together. I still feel it is not enough for all they have done for me in the past. It was truly enjoyable taking them both out together for lunch. I have no idea when the last time was that we all were able to go to a restaurant and enjoy family time.
Thursday was one of those days I would rather remove from my mind. Taking dad to the clinical cancer research department. I grabbed a wheelchair and wheeled him down the long ramp into the hospital and towards admitting, then off we go. Is this really father daughter time? Him so concerned about me pushing him, and me saying there is no problem. There truly is not much too him.
As he gets up onto the bed and they start the procedure, I grab a warm blanket to put on him. He lays there shaking and I wish I could help. He is like a small child not knowing what to expect next. Dr. Pearson comes in and sits down and talks to dad. He explains the reason for the chemo drug dad was put on, and the expectations of down the road. Dad states that when the time comes he needs transfusions every day, he doesn't want to live like that. Why is it I tear up and my dad is so brave? The doctor has such a great compassionate way of talking to us and takes over half an hour to ensure everything is looked at, explained and understood. I truly wish more doctors were as he is.
Because dad was sick on Wednesday, I had to go to the personal care home on my own. It is right across the street from mom which would enable him to walk over to the nursing home to see her. However, I discussed how they assist or transport from the personal care home knowing that dad would have difficulty making that short walk. He is so independent.
After we were done at the hospital, dad said he would go take a look at the personal care home. I had the day before put his name on "the list". This means we wait and how long you never know. How I hate this. Dad takes a quick tour, knowing when I look at him he is tired. He has such a hard time getting in and out of the car, and struggles going up and down stairs, and even down the hallways in the care home. Jenna, the supervisor, asks dad if he wants to go in where they are doing a "sing a long" with the other residents. Dad says he can't sing. She took him by the hand, smiled and said she couldn't either with some friendly words that were very warm, and dad walked into the room with her and started to sing. My heart broke and again the tears welled in my eyes. The kindness of one person taking my dad and making him feel so very special was so enlightening.
Later that day we discussed whether or not he had an obituary written. What a horrible thing to bring up in conversation, but mom wanted to know and if not, at least I help prepare. He didn't. It wasn't as hard as I had imagined it would be. He discussed some facts about the war I never knew, not to be part of his obituary, but giving me more insight into his life. I learnt many things, and we went to see mom and continued our conversation.
Because I was leaving Saturday, I needed to get a few more things done. Being who I have been brought up to be, I went to a card shop and picked out a card for mom and a card for dad. It took longer than I thought, but I knew what I was looking for and found them.
Friday night I took dad out for supper and off to the harness races, some place he loved and hadn't been able to enjoy for quite a long time. We took in 3 races and he started to shake. It was getting somewhat cool out. I took my coat off and put it on him and he still continued to shake. He did not want to leave he wanted to see another race. He was doing so well and had an opportunity to see a lot of his old friends. I went to the car, got out a blanket and another coat, and took them back and put them on him. I hugged him and tried to warm him but it didn't help. He continued to shake, so I told him we needed to go. He agreed after the fourth race.
My flight Saturday was a late afternoon flight, which enabled me to see mom, leave a card in her basket, tell her I loved her and would see her again soon, and off to dad's before my ride picked me up. The nice thing was, the old neighbour had called dad and said he was going to take him with us to the airport and then take him to his home for lunch. I hadn't had an opportunity to say so long to my dad at the airport for so many years, holding back the tears were hard. I had left a card on his dresser for him.
This was such a happy week, a great week, and one thing we should all realize. You never know what may transpired come tomorrow.
Every cloud has a silver lining. I truly hope this week lingers in my mind for the remaining of my days. I don't know what it was that made me need to go back home when I did, but I am so thankful I did. I only wish I had more time, or maybe, just never left.
Flying home to see mom and dad. It is such a joyous occasion, especially for me, but hard when you look at how thin and old they are getting. I don't feel any older, but the realization is there.
There will be a lot of personal thoughts in these next few blogs, basically for my children, in hopes that it helps understanding the true meaning of life.
It's always amazing how when I arrive at dad's, the first thing he says is you need to go see your mom. There is so much love he has for her. Something that is lost in the day and age, although every now and then I think I see it in a couple. Relationships are something you don't take for granted, perservere, listen, understand, communicate, compromise and love each other.
Instead, I talked with dad, went through all this paperwork with him, listened to him about how he wanted things done, and then said let's go see mom and go out and get some borsch!
He's so wobbly, and watching him go down the hallway with his walker I try to hide my tears. I never thought of or imagined my parents aging. Have I ever truly thanked them for being the best parents in the world to me?
I spend my days back and forth with both of them and with them both together with me. Talking to dad about going into a personal care home and getting it set up while I am home is agreeable to him. I also spoke to his cancer specialist, Dr. Pearson, who took over a 1/2 hour with me on the phone on Tuesday, listened to my concerns, answered my questions and who agreed to meet both dad and I on Thursday when he would go for another transfusion.
I took mom shopping for a day, dad out to play the slots and enjoy those things that neither of them can do on their own. We smile, laugh and enjoy all our time together. I still feel it is not enough for all they have done for me in the past. It was truly enjoyable taking them both out together for lunch. I have no idea when the last time was that we all were able to go to a restaurant and enjoy family time.
Thursday was one of those days I would rather remove from my mind. Taking dad to the clinical cancer research department. I grabbed a wheelchair and wheeled him down the long ramp into the hospital and towards admitting, then off we go. Is this really father daughter time? Him so concerned about me pushing him, and me saying there is no problem. There truly is not much too him.
As he gets up onto the bed and they start the procedure, I grab a warm blanket to put on him. He lays there shaking and I wish I could help. He is like a small child not knowing what to expect next. Dr. Pearson comes in and sits down and talks to dad. He explains the reason for the chemo drug dad was put on, and the expectations of down the road. Dad states that when the time comes he needs transfusions every day, he doesn't want to live like that. Why is it I tear up and my dad is so brave? The doctor has such a great compassionate way of talking to us and takes over half an hour to ensure everything is looked at, explained and understood. I truly wish more doctors were as he is.
Because dad was sick on Wednesday, I had to go to the personal care home on my own. It is right across the street from mom which would enable him to walk over to the nursing home to see her. However, I discussed how they assist or transport from the personal care home knowing that dad would have difficulty making that short walk. He is so independent.
After we were done at the hospital, dad said he would go take a look at the personal care home. I had the day before put his name on "the list". This means we wait and how long you never know. How I hate this. Dad takes a quick tour, knowing when I look at him he is tired. He has such a hard time getting in and out of the car, and struggles going up and down stairs, and even down the hallways in the care home. Jenna, the supervisor, asks dad if he wants to go in where they are doing a "sing a long" with the other residents. Dad says he can't sing. She took him by the hand, smiled and said she couldn't either with some friendly words that were very warm, and dad walked into the room with her and started to sing. My heart broke and again the tears welled in my eyes. The kindness of one person taking my dad and making him feel so very special was so enlightening.
Later that day we discussed whether or not he had an obituary written. What a horrible thing to bring up in conversation, but mom wanted to know and if not, at least I help prepare. He didn't. It wasn't as hard as I had imagined it would be. He discussed some facts about the war I never knew, not to be part of his obituary, but giving me more insight into his life. I learnt many things, and we went to see mom and continued our conversation.
Because I was leaving Saturday, I needed to get a few more things done. Being who I have been brought up to be, I went to a card shop and picked out a card for mom and a card for dad. It took longer than I thought, but I knew what I was looking for and found them.
Friday night I took dad out for supper and off to the harness races, some place he loved and hadn't been able to enjoy for quite a long time. We took in 3 races and he started to shake. It was getting somewhat cool out. I took my coat off and put it on him and he still continued to shake. He did not want to leave he wanted to see another race. He was doing so well and had an opportunity to see a lot of his old friends. I went to the car, got out a blanket and another coat, and took them back and put them on him. I hugged him and tried to warm him but it didn't help. He continued to shake, so I told him we needed to go. He agreed after the fourth race.
My flight Saturday was a late afternoon flight, which enabled me to see mom, leave a card in her basket, tell her I loved her and would see her again soon, and off to dad's before my ride picked me up. The nice thing was, the old neighbour had called dad and said he was going to take him with us to the airport and then take him to his home for lunch. I hadn't had an opportunity to say so long to my dad at the airport for so many years, holding back the tears were hard. I had left a card on his dresser for him.
This was such a happy week, a great week, and one thing we should all realize. You never know what may transpired come tomorrow.
Every cloud has a silver lining. I truly hope this week lingers in my mind for the remaining of my days. I don't know what it was that made me need to go back home when I did, but I am so thankful I did. I only wish I had more time, or maybe, just never left.
Wednesday, September 29, 2010
A Happy Day
This is a happy day. This is the first day in many that Dad called me. He wished me a belated birthday and stated both him and mom forgot, however, mom has fluid on her lungs and they are trying to determine what to do and she was not able to call. So although a happy day that dad made a call, not so happy that mom is again under the weather.
He is excited that I am coming home. There's the positive needed at this time. Stated he doesn't feel too bad, considering. They took his blood today but no results back until tomorrow morning. So is not sure if he needs another blood transfusion or not. Stated he has a lump where they put the needle in to do the bone marrow test. He did inform the nurses at the cancer clinic about it today and they said if he comes in tomorrow they will look at it. His foot is still sore, but is going to his doctor to have him refer him to a foot doctor. This is all good news for me.
He also stated that when I get there that we need to look at other places for him. I am glad he realizes he needs more help. He has such a concern about the possibility of not being able to take his car. I realize that this would mean a big loss of his independence, but I am willing to sacrafice that for my dad having someone around a bit more to look after him and his needs. That is what is important.
Maybe the CPAS Coordinator's visit helped somewhat yesterday when she talked with him. I do not know. What I do know is the whole system still stinks. But for now, I will take another day of my daddy sounding happy inside.
Today will shall flourish, as tomorrow we may not.
He is excited that I am coming home. There's the positive needed at this time. Stated he doesn't feel too bad, considering. They took his blood today but no results back until tomorrow morning. So is not sure if he needs another blood transfusion or not. Stated he has a lump where they put the needle in to do the bone marrow test. He did inform the nurses at the cancer clinic about it today and they said if he comes in tomorrow they will look at it. His foot is still sore, but is going to his doctor to have him refer him to a foot doctor. This is all good news for me.
He also stated that when I get there that we need to look at other places for him. I am glad he realizes he needs more help. He has such a concern about the possibility of not being able to take his car. I realize that this would mean a big loss of his independence, but I am willing to sacrafice that for my dad having someone around a bit more to look after him and his needs. That is what is important.
Maybe the CPAS Coordinator's visit helped somewhat yesterday when she talked with him. I do not know. What I do know is the whole system still stinks. But for now, I will take another day of my daddy sounding happy inside.
Today will shall flourish, as tomorrow we may not.
Tuesday, September 28, 2010
Just Personal Thoughts
There are numerous blogs that one can read regarding various cancers and what they have faced. It helps one to get a better perspective on how people have dealt with it.
My one big blow in this big picture goes back to the fact that my dad was faced with this disease at a very old age, and just prior to him and my mother being separated with her going into a nursing home. I'm not sure how one can stand alone and live with the thoughts of what is happening to them with no one to talk to. His lifetime partner no longer there. This situation is so different from some that I have read. To keep positive I realize, but that is difficult under these circumstances. I have tried and continue to try to keep that positive approach for my father. I have always looked at the positives of so many situations in my life, many of which there truly was no positive result.
Almost 3 years ago, I was faced with moving my parents from their home to an assisted living facility, then within a year faced with having to have extra help in to assist my mom, along with a nurse sleeping on the couch at night to help my father out until she could be placed into a nursing home, to my parents being separated from each other. Do we ever stop to really think what this does on them? I know that I did when I first moved them out of their home. It was a difficult decision but needed to be done.
There are so many factors that you never can take into account for every individual situation that happens. Yes CMML is one of those unknown cancers. It has hit my dad like a brick wall. He has always been a fighter, but what does he truly have left to fight for? How can you ever keep a positive approach at this stage in life?
This blog I am sure will have no rhyme or reason to many who are or may read it. Again, some are thoughts specific for my children. Some are thoughts that one day I will look back on. It is a part of my life that I don't like to talk about to people ... I don't want people to say "I'm sorry". I'm not looking for pity or sorrow, just a way to help others, some day, with things they may have to face in life. Then again, if society continues to change the way it is, there may no longer be people who truly care in this world.
I remember Terry Fox and what he did. I went and saw his statue a number of years ago. For those who have fought cancer and do something to bring about awareness, you truly are amazing. For those of us who have people we love who have had to deal with cancer, I too wish to bring about awareness.
The Drug
It is interesting because everything I research on this drug shows it was initially used for HIV patients. I have been able to come across some dialogue for other people who have used it, but not for CMML. Although it has come up in some facts about CMML and the use of this drug, I would like to know how it has worked for those with CMML.
I am hoping that continued research will help me learn me. Guess the one good thing is I have in my past work experience, many years of doing research so for me it is truly a good learning experience.
I am hoping that continued research will help me learn me. Guess the one good thing is I have in my past work experience, many years of doing research so for me it is truly a good learning experience.
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