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.
Hydroxyurea
As I continue my research on this drug, I will blog what I am finding on it so anyone else who ever is prescribed this drug has some indications of side effects.
Hydroxyurea is usually taken once a day. When hydroxyurea is used to treat certain types of cancer, it may be taken once every third day. Try to take hydroxyurea at about the same time of day on the days that you are scheduled to take the medication. Follow the directions on your prescription label carefully and ask your doctor or pharmacist to explain anything you do not understand. Take hydroxyurea exactly as directed. Do not take more or less of it or take it more often than prescribed by your doctor.
Your doctor may start you on a low dose of hydroxyurea and gradually increase your dose.
Hydroxyurea may help control the symptoms of sickle cell anemia but does not cure the condition. Continue to take hydroxyurea even if you feel well. Do not stop taking this medication without talking to your doctor.
Hydroxyurea can temporarily lower the number of white blood cells in your blood, increasing the chance of getting an infection. It can also lower the number of platelets, which are necessary for proper blood clotting. If this occurs, there are certain precautions you can take, especially when your blood count is low, to reduce the risk of infection or bleeding:
This medicine may cause temporary loss of hair in some people. After treatment has ended, normal hair growth should return, although the new hair may be a slightly different color or texture.
Check with your doctor immediately if any of the following side effects occur:
More common
More common
This medication is used:
- to treat melanoma (a type of skin cancer)
- to treat chronic myelocytic leukemia (CML; cancer of the white blood cells)
- to treat recurrent, metastatic, or inoperable ovarian cancer (cancer of the ovary [a female reproductive organ] that has returned after treatment, that has spread, or that cannot be treated with surgery)
- with radiation therapy to control primary squamous cell carcinoma (a type of skin cancer) that affects any part of the head or neck except the lips
- to prevent crises (episodes of severe pain) and decrease the need for blood transfusions (transfer of one person's blood to another person's body) in people who have sickle cell anemia (a blood disease that may cause painful crises, a low number of red blood cells, infection, and damage to the internal organs).
Hydroxyurea is usually taken once a day. When hydroxyurea is used to treat certain types of cancer, it may be taken once every third day. Try to take hydroxyurea at about the same time of day on the days that you are scheduled to take the medication. Follow the directions on your prescription label carefully and ask your doctor or pharmacist to explain anything you do not understand. Take hydroxyurea exactly as directed. Do not take more or less of it or take it more often than prescribed by your doctor.
Your doctor may start you on a low dose of hydroxyurea and gradually increase your dose.
Hydroxyurea may help control the symptoms of sickle cell anemia but does not cure the condition. Continue to take hydroxyurea even if you feel well. Do not stop taking this medication without talking to your doctor.
Side effects
Hydroxyurea may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:- nausea
- vomiting
- diarrhea
- constipation
- drowsiness
- rash
- purple, blue, or black discoloration of the skin or nails
- loss of feeling in one area of the body
- sores on the skin or in the mouth
- foul-smelling substance oozing from the skin
- swelling of the hands, feet, ankles, or lower legs
Hydroxyurea can temporarily lower the number of white blood cells in your blood, increasing the chance of getting an infection. It can also lower the number of platelets, which are necessary for proper blood clotting. If this occurs, there are certain precautions you can take, especially when your blood count is low, to reduce the risk of infection or bleeding:
- If you can, avoid people with infections. Check with your doctor immediately if you think you are getting an infection or if you get a fever or chills, cough or hoarseness, lower back or side pain, or painful or difficult urination.
- Check with your doctor immediately if you notice any unusual bleeding or bruising; black, tarry stools; blood in the urine or stools; or pinpoint red spots on your skin.
- Be careful when using a regular toothbrush, dental floss, or toothpick. Your medical doctor, dentist, or nurse may recommend other ways to clean your teeth and gums. Check with your medical doctor before having any dental work done.
- Do not touch your eyes or the inside of your nose unless you have just washed your hands and have not touched anything else in the meantime.
- Be careful not to cut yourself when you are using sharp objects such as a safety razor or fingernail or toenail cutters.
- Avoid contact sports or other situations where bruising or injury could occur.
This medicine may cause temporary loss of hair in some people. After treatment has ended, normal hair growth should return, although the new hair may be a slightly different color or texture.
Side Effects
Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.Check with your doctor immediately if any of the following side effects occur:
More common
- Cough or hoarseness
- Fever or chills
- Lower back or side pain
- Painful or difficult urination
- Black, tarry stools
- Blackening of the fingernails and toenails
- Blood in the urine or stools
- Pinpoint red spots on the skin
- Sores in the mouth and on the lips
- Unusual bleeding or bruising
- Confusion
- Convulsions (seizures)
- Difficulty with urination
- Dizziness
- Headache
- Joint pain
- Seeing, hearing, or feeling things that are not there
- Swelling of the feet or lower legs
- Bleeding under the skin
- Blisters on the skin
- Bluish or pale color on the skin of the fingers or toes
- Coldness of the fingers or toes
- Crater-like lesions on the skin
- Itching skin
- Numbness or tingling of the fingers or toes
- Pain in the fingers or toes
- Unusual tiredness or weakness
- Weight loss
More common
- Diarrhea
- Drowsiness
- Loss of appetite
- Nausea or vomiting
- Constipation
- Redness of skin at the place of irradiation
- Skin rash and itching
My Birthday
It's my birthday and what a great way to enjoy it.
My mom called last night and the first thing she asked was "so what did you think of the assessment"? I told her I wasn't sure what she was talking about, but an assessment was done on dad late in the afternoon and I had not been informed of anything.
My call came this morning. The coordinator who assessed dad stated he still was not considered heavy enough care for a nursing home. Although he has lost more weight since she saw him in July, has difficulty walking, he can still get down for his meals, dress himself and seems quite coherent. She said she talked with him for over an hour and he kept saying how happy and excited he is that I will be home this Saturday. My questions again arose about what is it that makes someone "qualify" (for lack of a better word) for a nursing home. She said the one thing is incontinence and/or memory loss.
Everything she told me that my dad said to her, I informed her that he was my dad and I know him well and am much like him. Yes, this sounds confusing, but we have always been a family that never relies on anyone and always tries to get through the tough times on our own. Mom and dad were always very private people. I think I noted in a posting that it was difficult to get them to tell me when things were in array. My dad is a proud man and very independent and wants to be that way. He didn't agree he needed home care nor going into a personal care home. I guess these are decisions we will have to make when I get there.
She told me this would be my toughest time coming home. She said in a much quieter voice he started tearing up and said to her "I'm ready to die". "I've had a good life and it is time to go." I told her I was feeling that. That's the reason I made arrangements to go home. He has asked me to stay for a month and for some reason I feel that is all he has left in him.
I'm scared. Gosh there have not been many times in my life I can say that. Thoughts run through my head about whether or not I get airplane tickets for the kids to come home with me. But I am my father's daughter. Again, I will do this on my own and not put my children through seeing their grandfather in a way I do not want them to see him. He is frail and now cannot hold back the tears. He too is scared. Somehow we both have to get some final things completed and then I can pray for the best. Am I being selfish wanting to be alone with him? Definitely not how I was brought up, but something tells me this is our time.
The Doctor put him on a drug called Hydroxyurea. She had never heard of it. I told her that my dad said it had just been approved in Canada and when he went to pick it up at the drugstore, they never had any and had to order it in. So now my research begins on this drug, which has been around for many years, just maybe not in that amazing country of Canada. As I continue to research it, I will post more about it.
Today I turned 51. I look back on my life and the many great memories I have, and those people I have allowed into my life who truly are remarkable people. I think of the many times my mom and dad have told me to live my life to the fullest each and every day and surround myself with those people who will be there for me, no matter what. There's not a lot of those kind of people around it seems. Too many are selfish and think only of themselves and "what's in it for me" or want to know what might be better for them. My heart breaks when someone I know well has a life altering moment, but my heart also fills with happiness when something good happens to them. I would give the world to those I cherish as my friends, they know that, they can count on me, and we have wonderful relationships because we are truly one of the same. I already know who will be there for me for the right reasons when my mom and dad die.
Life is a gift. People come in and out of our lives everyday, and only a few remain along the way.
My mom called last night and the first thing she asked was "so what did you think of the assessment"? I told her I wasn't sure what she was talking about, but an assessment was done on dad late in the afternoon and I had not been informed of anything.
My call came this morning. The coordinator who assessed dad stated he still was not considered heavy enough care for a nursing home. Although he has lost more weight since she saw him in July, has difficulty walking, he can still get down for his meals, dress himself and seems quite coherent. She said she talked with him for over an hour and he kept saying how happy and excited he is that I will be home this Saturday. My questions again arose about what is it that makes someone "qualify" (for lack of a better word) for a nursing home. She said the one thing is incontinence and/or memory loss.
Everything she told me that my dad said to her, I informed her that he was my dad and I know him well and am much like him. Yes, this sounds confusing, but we have always been a family that never relies on anyone and always tries to get through the tough times on our own. Mom and dad were always very private people. I think I noted in a posting that it was difficult to get them to tell me when things were in array. My dad is a proud man and very independent and wants to be that way. He didn't agree he needed home care nor going into a personal care home. I guess these are decisions we will have to make when I get there.
She told me this would be my toughest time coming home. She said in a much quieter voice he started tearing up and said to her "I'm ready to die". "I've had a good life and it is time to go." I told her I was feeling that. That's the reason I made arrangements to go home. He has asked me to stay for a month and for some reason I feel that is all he has left in him.
I'm scared. Gosh there have not been many times in my life I can say that. Thoughts run through my head about whether or not I get airplane tickets for the kids to come home with me. But I am my father's daughter. Again, I will do this on my own and not put my children through seeing their grandfather in a way I do not want them to see him. He is frail and now cannot hold back the tears. He too is scared. Somehow we both have to get some final things completed and then I can pray for the best. Am I being selfish wanting to be alone with him? Definitely not how I was brought up, but something tells me this is our time.
The Doctor put him on a drug called Hydroxyurea. She had never heard of it. I told her that my dad said it had just been approved in Canada and when he went to pick it up at the drugstore, they never had any and had to order it in. So now my research begins on this drug, which has been around for many years, just maybe not in that amazing country of Canada. As I continue to research it, I will post more about it.
Today I turned 51. I look back on my life and the many great memories I have, and those people I have allowed into my life who truly are remarkable people. I think of the many times my mom and dad have told me to live my life to the fullest each and every day and surround myself with those people who will be there for me, no matter what. There's not a lot of those kind of people around it seems. Too many are selfish and think only of themselves and "what's in it for me" or want to know what might be better for them. My heart breaks when someone I know well has a life altering moment, but my heart also fills with happiness when something good happens to them. I would give the world to those I cherish as my friends, they know that, they can count on me, and we have wonderful relationships because we are truly one of the same. I already know who will be there for me for the right reasons when my mom and dad die.
Life is a gift. People come in and out of our lives everyday, and only a few remain along the way.
Monday, September 27, 2010
Another Day The Normal Snags
I look at the stats of those who have been looking at my blog and wonder if any of them have ever encountered CMML or they are just reading it to read it. I truly hope one person who views this blog has some knowledge of CMML either within their family or a friend and will actually talk to me about their experience.
Today I made that all important phone call to my CPAS Coordinator to have my dad re-assessed. Informing her of how things have changed over the course of the past 4 weeks and what I have been able to get from my dad about what is happening, she still informs me he is more than likely not ready to go into a nursing home. Oh don't we love how the government has so much control. Again he has to not be able to dress himself, shower, take his meds and be incontinent. Wow, doesn't this show all of us just how important our seniors are in society.
She is to call me after the assessment and give me an update. At least this way I may be prepared for my visit in 5 more days.
I wonder what ever happened to the dignity of an individual. I know that my dad is not the only one in this situation. I know there are other families out their who are or have experienced the same problems that I keep encountering. So this blog of "feelings of hopelessness" keeps getting redirected back to one main problem.
Living in the United States people have to realize how lucky they are to have so many services available to them not only for the elderly, but health care in general. I truly hope it never goes to a socialized system in which the government makes all the calls on how an individual will be treated. So many I talk to don't think they are. If only they knew.
My dad is a World War II vet. He never talked to me a lot about the war. I can understand that. Having done a lot of publishing in the past, I remember one book in which vets were interviewed so that excerpts of what it was like during this time could be placed into it. So many don't want to remember. So many lives where lost. I cried when reading letters that had been sent to loved ones, and they never made it back. My dad gave me his medals to give to my son. He gave me his army trunk which I have stored away, along with his water canteen and a few other items. For me these are the precious items in life that although they have no memories of what it was like, they belonged to my dad and mean more to me than anything else. I am one of the lucky one's in that he lived through this period of time, just not to talk about it. In Flanders Fields ... may the poppies always bloom and those who were lost, we never lose sight of what they did for our country.
I'm sure those who read this blog wonder at times why I wonder into other personal thoughts. Again, this is not only in an attempt to reach out to those who have dealt with CMML, but also for my children who would never know some of this about their grandparents and I wish it to live on forever.
In this vast technological world of ours, this is something that hopefully will allow them to help remember their grandparents and who they were. With so many changes that have happened throughout my mom and dad's life time, they both were very open-minded and tried to keep up with or at least learn what they could about these quickly changing cycles of events. Many of my friends parents never would or wanted to. I guess another reason why I love them so much.
I never had an opportunity to get to know more about my grandparents and their lives. Just the basics, but maybe in those times, it was just basic, I don't know. When my grandmother passed away, all her recipes where thrown out. I was livid. For me, so many of them where childhood memories. Why would anyone think they weren't worth keeping. When I moved my mom and dad out of their home they had lived in for over 40 years, I didn't let that happen. Then again, there was only me.
When life has no meaning, is there truly a reason left to live? When life has a meaning, what then?
Today I made that all important phone call to my CPAS Coordinator to have my dad re-assessed. Informing her of how things have changed over the course of the past 4 weeks and what I have been able to get from my dad about what is happening, she still informs me he is more than likely not ready to go into a nursing home. Oh don't we love how the government has so much control. Again he has to not be able to dress himself, shower, take his meds and be incontinent. Wow, doesn't this show all of us just how important our seniors are in society.
She is to call me after the assessment and give me an update. At least this way I may be prepared for my visit in 5 more days.
I wonder what ever happened to the dignity of an individual. I know that my dad is not the only one in this situation. I know there are other families out their who are or have experienced the same problems that I keep encountering. So this blog of "feelings of hopelessness" keeps getting redirected back to one main problem.
Living in the United States people have to realize how lucky they are to have so many services available to them not only for the elderly, but health care in general. I truly hope it never goes to a socialized system in which the government makes all the calls on how an individual will be treated. So many I talk to don't think they are. If only they knew.
My dad is a World War II vet. He never talked to me a lot about the war. I can understand that. Having done a lot of publishing in the past, I remember one book in which vets were interviewed so that excerpts of what it was like during this time could be placed into it. So many don't want to remember. So many lives where lost. I cried when reading letters that had been sent to loved ones, and they never made it back. My dad gave me his medals to give to my son. He gave me his army trunk which I have stored away, along with his water canteen and a few other items. For me these are the precious items in life that although they have no memories of what it was like, they belonged to my dad and mean more to me than anything else. I am one of the lucky one's in that he lived through this period of time, just not to talk about it. In Flanders Fields ... may the poppies always bloom and those who were lost, we never lose sight of what they did for our country.
I'm sure those who read this blog wonder at times why I wonder into other personal thoughts. Again, this is not only in an attempt to reach out to those who have dealt with CMML, but also for my children who would never know some of this about their grandparents and I wish it to live on forever.
In this vast technological world of ours, this is something that hopefully will allow them to help remember their grandparents and who they were. With so many changes that have happened throughout my mom and dad's life time, they both were very open-minded and tried to keep up with or at least learn what they could about these quickly changing cycles of events. Many of my friends parents never would or wanted to. I guess another reason why I love them so much.
I never had an opportunity to get to know more about my grandparents and their lives. Just the basics, but maybe in those times, it was just basic, I don't know. When my grandmother passed away, all her recipes where thrown out. I was livid. For me, so many of them where childhood memories. Why would anyone think they weren't worth keeping. When I moved my mom and dad out of their home they had lived in for over 40 years, I didn't let that happen. Then again, there was only me.
When life has no meaning, is there truly a reason left to live? When life has a meaning, what then?
Sunday, September 26, 2010
A week
How many times does one think they wish they could re-do some of the past either to improve upon or change? I know I have thought this many times and wished I had spent and appreciated my parents at a younger age than I did.
My dad and I never had a great relationship, probably because he was always the one who did the punishing and as a child and teenager would dread waiting for him to come home from work to see what it would be. It was my mom who many years later ensured that we had a father/daughter relationship and I am so happy she did that as I'm not sure how I would have done that on my own. My dad always hated talking on the telephone and my mom made him start calling me and his brothers and sisters prior to their deaths.
It has been over a week since I spoke to dad. Some of this my fault because I have been away, but again I hate making that call not knowing where he will be and not wanting him to rush to the phone and potentially fall. However, today I did when I arrived back in Ohio.
The phone rang many times and the first thought was he fell. I would feel so awful knowing it was my fault. After the 10th or 11th ring he finally answered with such a fragile voice. I always say "how's my daddy"! He said he felt horrible and needless to say panic rushes through me.
So I asked why. He stated he had 3 bags of blood and a bag of platelets this week along with his bone marrow test. The doctor also put him on this drug, which he has now been on for 3 days, and along with his foot still hurting, he feels awful. The need for this drug to start working is immediate. He has had a transfusion every week for the past 4 weeks now and that is not good for a person. My heart is now in my throat. What do you say? Where are the positive words I need to give him now. He also said mom's blood pressure has been going up and down for the past few days and she has not been doing well. Gosh I know if he dies, she probably will as well if we can't settle things down.
I know I only have 6 days until I will be there to see what I can do. It will be the longest 6 days of my life and I have had a lot of these.
I have not told my kids what is going on. My daughter would be in tears and I think I now understand why mom and dad both never told me things until it was a necessity. It truly isn't about not wanting to bother your children, it is not wanting to upset them perhaps unnecessarily.
I don't know if I am ready to see how dad looks. The shock on my face a few years back when he had lost so much weight so quick, was probably hard on him as well. I don't know how you prepare yourself.
Life is precious. Family is precious. Your friends are precious. I realize each day I am happy for my health and those in my life. I realize that you need to smile at a stranger in hopes it makes their day brighter.
I am a very loving person and cannot thank my mom and dad enough for teaching me that. So many people in this world have a hard time accepting those who are loving. It is sad. I truly think we are a small breed, or maybe it is just the way Canadians are brought up, or maybe it is just the way society has now changed and cannot accept it. I'm not sure.
If you have had anyone in your family who has had cancer and have had to cope through it with feelings of despair and hopelessness, you will understand this blog.
For my children, I truly hope one day you will understand why I have tried to raise you the way I did. Although I was harsh, it is a loving way and you have both grown to be wonderful adults.
Accept those who are different, as you are different to them. Give of yourself, because that is the most lasting gift of all. Love those who deserve your love with all your heart. If they are not acceptant of it, they are truly not deserving of anyone.
My dad and I never had a great relationship, probably because he was always the one who did the punishing and as a child and teenager would dread waiting for him to come home from work to see what it would be. It was my mom who many years later ensured that we had a father/daughter relationship and I am so happy she did that as I'm not sure how I would have done that on my own. My dad always hated talking on the telephone and my mom made him start calling me and his brothers and sisters prior to their deaths.
It has been over a week since I spoke to dad. Some of this my fault because I have been away, but again I hate making that call not knowing where he will be and not wanting him to rush to the phone and potentially fall. However, today I did when I arrived back in Ohio.
The phone rang many times and the first thought was he fell. I would feel so awful knowing it was my fault. After the 10th or 11th ring he finally answered with such a fragile voice. I always say "how's my daddy"! He said he felt horrible and needless to say panic rushes through me.
So I asked why. He stated he had 3 bags of blood and a bag of platelets this week along with his bone marrow test. The doctor also put him on this drug, which he has now been on for 3 days, and along with his foot still hurting, he feels awful. The need for this drug to start working is immediate. He has had a transfusion every week for the past 4 weeks now and that is not good for a person. My heart is now in my throat. What do you say? Where are the positive words I need to give him now. He also said mom's blood pressure has been going up and down for the past few days and she has not been doing well. Gosh I know if he dies, she probably will as well if we can't settle things down.
I know I only have 6 days until I will be there to see what I can do. It will be the longest 6 days of my life and I have had a lot of these.
I have not told my kids what is going on. My daughter would be in tears and I think I now understand why mom and dad both never told me things until it was a necessity. It truly isn't about not wanting to bother your children, it is not wanting to upset them perhaps unnecessarily.
I don't know if I am ready to see how dad looks. The shock on my face a few years back when he had lost so much weight so quick, was probably hard on him as well. I don't know how you prepare yourself.
Life is precious. Family is precious. Your friends are precious. I realize each day I am happy for my health and those in my life. I realize that you need to smile at a stranger in hopes it makes their day brighter.
I am a very loving person and cannot thank my mom and dad enough for teaching me that. So many people in this world have a hard time accepting those who are loving. It is sad. I truly think we are a small breed, or maybe it is just the way Canadians are brought up, or maybe it is just the way society has now changed and cannot accept it. I'm not sure.
If you have had anyone in your family who has had cancer and have had to cope through it with feelings of despair and hopelessness, you will understand this blog.
For my children, I truly hope one day you will understand why I have tried to raise you the way I did. Although I was harsh, it is a loving way and you have both grown to be wonderful adults.
Accept those who are different, as you are different to them. Give of yourself, because that is the most lasting gift of all. Love those who deserve your love with all your heart. If they are not acceptant of it, they are truly not deserving of anyone.
Tuesday, September 21, 2010
Worry
It has been four days now since my dad has called me. I know today was his procedure for them to take a sample of his bone marrow and basically have felt ill all day. I know he would do nothing but worry and definitely not sleep at all last night, not that he has had a good sleep now at night since they diagnosed him with his CMML.
I've stated before my dad was always a strong man ... in that I mean he could basically take anything that anyone threw at him and get past it. But since he was diagnosed, he has not slept well at night and sometimes doesn't sleep at all. He has asked the doctor's for sleeping pills, many who stated they didn't want to give him any because of "his condition" and the fact that they don't mix well with the drugs he is on. So let's just not allow him to sleep! I know now he does nothing but worry about it and I'm not sure if he is afraid that he just won't wake up, the fact that he had to place my mom into a nursing home and is no longer by her side, or why he doesn't sleep anymore. He tells me he just lies in bed at night. I again try to put a positive spin onto this and inform him that at least he is getting rest. He finally had his specialist agree to give him sleeping pills. I am not sure if I was relieved by this news or not, even though it hasn't helped him at all. Maybe it is just a placebo ... you just never know.
He states he hates being in the suite and staring at the 4 walls. Gosh, I never really thought of life that way. My dad was always so sociable and when mom and I would go shopping he would sit in the mall and meet everyone and have made a dozen new friends by the time we left. He would go and have coffee every day when he retired just to be with the "guys". Where has that gone? Like he keeps telling me, it sucks to get old.
A few years ago when I went home, we had to make a trip to the funeral home. It was time to get the arrangements all made to make my life easier. I was the one in tears and he was the one who was laughing and smiling about the type of urn to purchase, announcements and pictures. Maybe that was his way of coping through it, and although both my mom and dad have tried for many years now to prepare me for their death, again, I will never be ready. I am then the one who does not sleep and worries.
I hope he calls me later tonight. I just need to know that everything is ok. I have over the years fought with both mom and dad regarding the fact they don't tell me things that are happening that would in one way or another affect me. They always stated they didn't want me to have to worry. They still don't seem to realize that not making a call is more of a worry not knowing than making a call and telling me what has or is happening.
I've stated before my dad was always a strong man ... in that I mean he could basically take anything that anyone threw at him and get past it. But since he was diagnosed, he has not slept well at night and sometimes doesn't sleep at all. He has asked the doctor's for sleeping pills, many who stated they didn't want to give him any because of "his condition" and the fact that they don't mix well with the drugs he is on. So let's just not allow him to sleep! I know now he does nothing but worry about it and I'm not sure if he is afraid that he just won't wake up, the fact that he had to place my mom into a nursing home and is no longer by her side, or why he doesn't sleep anymore. He tells me he just lies in bed at night. I again try to put a positive spin onto this and inform him that at least he is getting rest. He finally had his specialist agree to give him sleeping pills. I am not sure if I was relieved by this news or not, even though it hasn't helped him at all. Maybe it is just a placebo ... you just never know.
He states he hates being in the suite and staring at the 4 walls. Gosh, I never really thought of life that way. My dad was always so sociable and when mom and I would go shopping he would sit in the mall and meet everyone and have made a dozen new friends by the time we left. He would go and have coffee every day when he retired just to be with the "guys". Where has that gone? Like he keeps telling me, it sucks to get old.
A few years ago when I went home, we had to make a trip to the funeral home. It was time to get the arrangements all made to make my life easier. I was the one in tears and he was the one who was laughing and smiling about the type of urn to purchase, announcements and pictures. Maybe that was his way of coping through it, and although both my mom and dad have tried for many years now to prepare me for their death, again, I will never be ready. I am then the one who does not sleep and worries.
I hope he calls me later tonight. I just need to know that everything is ok. I have over the years fought with both mom and dad regarding the fact they don't tell me things that are happening that would in one way or another affect me. They always stated they didn't want me to have to worry. They still don't seem to realize that not making a call is more of a worry not knowing than making a call and telling me what has or is happening.
Saturday, September 18, 2010
As Time Passes
I have to admit when you hear news you have to bring a positive twist to everything. Dad called on Thursday night and again was down. Three weeks in a row for a transfusion and platelets. I know what this has all begun to mean, and I'm not sure if he does or not. His foot is still swollen and very sore, the doctor at the cancer clinic looked at it and stated it very well could be the leukemia.
Like I said in a past post, my dad really likes this doctor because he has concern in him. The doctor talked with him and stated he wanted to test his bone marrow and then put him on a drug that has just been approved by Canada. This is of course because of the need for the transfusions every week and his white blood cells taking over. So on Tuesday, September 21st in the morning dad will have this procedure done for a second time. He isn't scared of the procedure as the first time around they did it without freezing anything. Gosh I have to give him credit for that because I am not sure if I could have done it. This time the doctor said he would freeze him up before he did the procedure. I wish I could be there to hold his hand, however in 2 more weeks I will be there to see what is going on. This procedure will determine I would guess the dosage of the drug he will be given. Dad has a hard time understanding all of this. However, me being me I gave that positive twist on how great this was and why they were doing the procedure again.
I know that when I get home in a few weeks I need to sit and talk to the doctor so I too can understand what is going on and where we are going. Any hope for dad just not to have pain.
Mom calls me as soon as she gets news like this. I have to try to spin the positive onto her as well. Why is it that everyone always has to look at the negative? I have heard so many great stories of people who have been given just a few weeks left to live from cancer have positively willed themselves into more years. I guess that is what I am for at this point.
I keep wondering where the positive approach is that my parents always gave me when I felt my life was falling down. Is it just that when a disease strikes someone, that they look at things in a different perspective or just that as it comes with age, it truly is hard to comprehend?
My children are a source of joy for both of them. Having had birthday's this month, it has elated both my mom and dad with my dad even singing happy birthday as a message to my daughter when she didn't answer the phone. It is quite comical to say the least since he doesn't like to sing and his spirit has truly lessened, but something I told her to keep on her phone. These are the keepsakes of life one doesn't ever want to lose. It is one of those intangibles that to me mean more than anything else in the world. It is like every card that my parents and children have given me throughout my life, these have meant so much more than anything else anyone gives you in life. That hug when you need someone, the ability to cry and then laugh when someone reminds you of that one ridiculous time you had. I truly hope I have passed this on to my own children, and that is that the intangiles are truly what life is all about.
We grow and we learn everyday. You would think in such a technological society that we have today, they would have a better grasp and understanding on why and what causes so many of these diseases. I realize we can't live forever, but why can't we live a life without pain and suffering? I know, it is a huge thing to ask for. I truly hope I just don't wake up one morning. Maybe that is asking too much.
Like I said in a past post, my dad really likes this doctor because he has concern in him. The doctor talked with him and stated he wanted to test his bone marrow and then put him on a drug that has just been approved by Canada. This is of course because of the need for the transfusions every week and his white blood cells taking over. So on Tuesday, September 21st in the morning dad will have this procedure done for a second time. He isn't scared of the procedure as the first time around they did it without freezing anything. Gosh I have to give him credit for that because I am not sure if I could have done it. This time the doctor said he would freeze him up before he did the procedure. I wish I could be there to hold his hand, however in 2 more weeks I will be there to see what is going on. This procedure will determine I would guess the dosage of the drug he will be given. Dad has a hard time understanding all of this. However, me being me I gave that positive twist on how great this was and why they were doing the procedure again.
I know that when I get home in a few weeks I need to sit and talk to the doctor so I too can understand what is going on and where we are going. Any hope for dad just not to have pain.
Mom calls me as soon as she gets news like this. I have to try to spin the positive onto her as well. Why is it that everyone always has to look at the negative? I have heard so many great stories of people who have been given just a few weeks left to live from cancer have positively willed themselves into more years. I guess that is what I am for at this point.
I keep wondering where the positive approach is that my parents always gave me when I felt my life was falling down. Is it just that when a disease strikes someone, that they look at things in a different perspective or just that as it comes with age, it truly is hard to comprehend?
My children are a source of joy for both of them. Having had birthday's this month, it has elated both my mom and dad with my dad even singing happy birthday as a message to my daughter when she didn't answer the phone. It is quite comical to say the least since he doesn't like to sing and his spirit has truly lessened, but something I told her to keep on her phone. These are the keepsakes of life one doesn't ever want to lose. It is one of those intangibles that to me mean more than anything else in the world. It is like every card that my parents and children have given me throughout my life, these have meant so much more than anything else anyone gives you in life. That hug when you need someone, the ability to cry and then laugh when someone reminds you of that one ridiculous time you had. I truly hope I have passed this on to my own children, and that is that the intangiles are truly what life is all about.
We grow and we learn everyday. You would think in such a technological society that we have today, they would have a better grasp and understanding on why and what causes so many of these diseases. I realize we can't live forever, but why can't we live a life without pain and suffering? I know, it is a huge thing to ask for. I truly hope I just don't wake up one morning. Maybe that is asking too much.
Monday, September 13, 2010
My phone call
Tonight was later than normal. I asked dad how he was and he stated in a solemn voice "not worth a damn". I hate to hear that. He was having another nose bleed and had had another in the morning at breakfast time. My dad is a proud man and these types of things that happen when others are around are hard for him to handle. He doesn't want people to know he isn't doing well. I know where I got that part of my being from.
He went to his GP today about his foot. The doctor has sent a note to the specialist. Dad asked about it and the doctor said it probably was the leukemia but the specialist would know. They are also going to do a gout check to make sure it isn't that.
That feeling of hopelessness builds inside of me. What can I do to help him? Why can I not take away all the pain like they would do when I was younger and hurt myself or was sick? What did my mom and dad do to deserve this? Why is it that good people always have to suffer so much and those who have no morales seem to never know what true suffering is?
So as I always try to do, cheer my dad up to hear him laugh a bit and get a smile in his voice. I don't want him to feel my emotions. I have cried so many times in the past number of years since they both have taken such unhealthy turns. Never wanted to show them as I need to be there and give them strength not sadness. Is this a way to make me stronger? I only wish I could take back some of the years I caused them so much grief.
Things seem to be going so quick now with dad. I always said to myself he would pass away before my mom because he did so much for her and never thought of what was needed for him. Why could we not have such wisdom when we are younger? Why is cancer such a horrible disease? Why does dad have to suffer alone ... that's right ... that is the Canadian system. I love my mom and dad so much that the pain is sometimes so horrible. They are my best friends in the world and have always been there for me ... now the tables have turned.
I only wish there was someone to talk to about this horrible disease. I don't want pity ... only more knowledge. I only want to know where in this circle of events my father's disease is truly at. It is so scary. I don't ever want that phone call, but know one day I will receive it and although they have both tried to prepare me for this, I am not prepared.
The feelings of hopelessness.
He went to his GP today about his foot. The doctor has sent a note to the specialist. Dad asked about it and the doctor said it probably was the leukemia but the specialist would know. They are also going to do a gout check to make sure it isn't that.
That feeling of hopelessness builds inside of me. What can I do to help him? Why can I not take away all the pain like they would do when I was younger and hurt myself or was sick? What did my mom and dad do to deserve this? Why is it that good people always have to suffer so much and those who have no morales seem to never know what true suffering is?
So as I always try to do, cheer my dad up to hear him laugh a bit and get a smile in his voice. I don't want him to feel my emotions. I have cried so many times in the past number of years since they both have taken such unhealthy turns. Never wanted to show them as I need to be there and give them strength not sadness. Is this a way to make me stronger? I only wish I could take back some of the years I caused them so much grief.
Things seem to be going so quick now with dad. I always said to myself he would pass away before my mom because he did so much for her and never thought of what was needed for him. Why could we not have such wisdom when we are younger? Why is cancer such a horrible disease? Why does dad have to suffer alone ... that's right ... that is the Canadian system. I love my mom and dad so much that the pain is sometimes so horrible. They are my best friends in the world and have always been there for me ... now the tables have turned.
I only wish there was someone to talk to about this horrible disease. I don't want pity ... only more knowledge. I only want to know where in this circle of events my father's disease is truly at. It is so scary. I don't ever want that phone call, but know one day I will receive it and although they have both tried to prepare me for this, I am not prepared.
The feelings of hopelessness.
Unconditional Love
"Love has no conditions. When we put conditions, when we put barriers and boundaries, then we lose love. Love is condition-less. Love is barrier-less. Look at the moon, sun, stars, trees. . . they are just on for everyone. When our love also flows for everyone, you become very natural."
Pujya Swamiji
My dad called Saturday night and stated that so far this month he has had 2 transfusions and platelets given to him. He sounds so depressed. His foot is still swollen and hurts so much. I asked if he talked to the nurses when he had his transfusion on Thursday, but he stated they were so busy with other patients he didn't want to bother them. Sounds like my dad.
My parents brought me up in a loving home. Here's the thing. I was adopted and when I think about other people who could have adopted me, my birth mother who contacted me and stated immediately in her letter to me "To my loving daughter", I truly have no misgivings of these 2 people who loved me as their own.
Although we didn't always see eye to eye, that's an expectation that should and needs to be realized in this day and age. My mom and dad didn't have a lot of money so I worked at an early age but it gave me good morales and that dependancy every child needs. I was not their friend, I was their daughter. They allowed me to make mistakes, learn from those mistakes and were always there to talk to them and not be criticized. Although I thought in my mind they were always so harsh on me growing up and I would never do the same to my children, I too was harsh on my children. Is this unconditional love? It is being there for you when your life has gone totally array and you don't know who to turn to. It is being unjudgemental and just listening when one needs to talk things through and within that, you get your answers. It is not making someone into who you are, for that is not allowing a person to grow. It is being the best parents in the world who I have more gratitude and love for. I wish I could take away all their pain.
Pujya Swamiji
My dad called Saturday night and stated that so far this month he has had 2 transfusions and platelets given to him. He sounds so depressed. His foot is still swollen and hurts so much. I asked if he talked to the nurses when he had his transfusion on Thursday, but he stated they were so busy with other patients he didn't want to bother them. Sounds like my dad.
My parents brought me up in a loving home. Here's the thing. I was adopted and when I think about other people who could have adopted me, my birth mother who contacted me and stated immediately in her letter to me "To my loving daughter", I truly have no misgivings of these 2 people who loved me as their own.
Although we didn't always see eye to eye, that's an expectation that should and needs to be realized in this day and age. My mom and dad didn't have a lot of money so I worked at an early age but it gave me good morales and that dependancy every child needs. I was not their friend, I was their daughter. They allowed me to make mistakes, learn from those mistakes and were always there to talk to them and not be criticized. Although I thought in my mind they were always so harsh on me growing up and I would never do the same to my children, I too was harsh on my children. Is this unconditional love? It is being there for you when your life has gone totally array and you don't know who to turn to. It is being unjudgemental and just listening when one needs to talk things through and within that, you get your answers. It is not making someone into who you are, for that is not allowing a person to grow. It is being the best parents in the world who I have more gratitude and love for. I wish I could take away all their pain.
Thursday, September 9, 2010
Thursday, September 9th, 2010
I know from my call from my dad yesterday he was to go to the hospital to again receive a blood transfusion and platelets today. Like I stated, this has now become a weekly event. I don't always hear from him on the day of his transfusions. It tires him out so easily and yet you wouldn't think that lieing on a bed for 3 hours would be. It is funny how those who have to cope with various illnesses like this, or those who need a transfusion, dialysis, radiation or chemo treatment, it just becomes a part of their new lifestyle.
I wish I was there to hold his hand while he goes through these each week. He is all alone. But my dad is and always has been such a proud man. He looked after my mother until he could no longer cope. We were only concerned about her well-being and not thinking about what it was doing to him while he was my mom's care-giver for so many years after her strokes. The night he called me in tears and stated he couldn't do it any more, I knew how proud a man he was. I love both him and my mom. They have endured so much in this life. They have made me who I am ... a strong, loving and caring person for which I hope my children will carry forward into their lives not only with their partners, but also pass on to their children.
I have tried to find support groups on line for those who have had loved one's who too have had CMML. It isn't easy. The sites I have found state to find groups who know about this type of leukemia as it is not like the others.
Through this blog, it is my hope that I may end up with a few people who follow who have also been through this type of disease. The need to educate and make others aware is my hopeful goal in all of this. I truly should have started blogging years ago when it all started. Maybe now, there wouldn't be such feelings of hopelessness.
Always live today as if it is the first day of the rest of your life. You have no idea what tomorrow will bring.
I wish I was there to hold his hand while he goes through these each week. He is all alone. But my dad is and always has been such a proud man. He looked after my mother until he could no longer cope. We were only concerned about her well-being and not thinking about what it was doing to him while he was my mom's care-giver for so many years after her strokes. The night he called me in tears and stated he couldn't do it any more, I knew how proud a man he was. I love both him and my mom. They have endured so much in this life. They have made me who I am ... a strong, loving and caring person for which I hope my children will carry forward into their lives not only with their partners, but also pass on to their children.
I have tried to find support groups on line for those who have had loved one's who too have had CMML. It isn't easy. The sites I have found state to find groups who know about this type of leukemia as it is not like the others.
Through this blog, it is my hope that I may end up with a few people who follow who have also been through this type of disease. The need to educate and make others aware is my hopeful goal in all of this. I truly should have started blogging years ago when it all started. Maybe now, there wouldn't be such feelings of hopelessness.
Always live today as if it is the first day of the rest of your life. You have no idea what tomorrow will bring.
CMML - Definiton .. Causes .. Symptoms ... Risk Factors ... Complications
Highlights
* Chronic myelomonocytic leukemia (CMML) and juvenile myelomonocytic leukemia (JMML) are
uncommon blood cancers that are classified by the World Health Organization (WHO) as “mixed elodysplastic/myeloproliferative diseases.”* CMML and JMML each start with one or more acquired changes (mutations) to the DNA of a single cell
called a “monocyte” (a type of blood cell).* For CMML, the median age at diagnosis ranges from 65 to 75 years.
Common CMML symptoms include weakness, fatigue, unexplained bruising and/or bleeding, infection and enlarged liver and/or spleen.
Most CMML patients are treated with drug therapy. Allogeneic stem cell transplantation is a potential
curative option for a small number of patients.The safety and effectiveness of new therapies for CMML are being researched in clinical
Introduction
Chronic myelomonocytic leukemia (CMML) is an uncommon blood cancer that has characteristics of two other types of blood cancers called myelodysplastic syndromes” (MDS) and “myeloproliferative disorders” (MPDs). For this reason the
World Health Organization (WHO) has classified CMML as “mixed myelodysplastic/myeloproliferative diseases.” This is a relatively new (2001) classification that is expected to lead to greaterunderstanding of this disease and to the development of more effective treatments. CMML was
Chronic Myelomonocytic Leukemia (CMML)
CMML is a clonal disorder, which means that it begins with one or more changes (mutations) to the DNA
Monocytes represent about 5 to 10 percent of the cells in normal human blood. These cells and other white cells called “neutrophils” are the two major microbe-eating and microbe-killing cells in the blood. When monocytes leave the blood and enter the tissue, they are converted to macrophages. The
macrophage is the monocyte-in-action: it can combat infection in the tissues, ingest dead cells and assist other cells, such as lymphocytes, in carrying out their immune functions.
The WHO classification categorizes CMML into two subtypes based on the percentage of blast cells (also referred to as “blasts”) found in the blood and marrow:
• CMML-1—Less than 5 percent blasts in the blood and less than 10 percent blasts in the marrow
• CMML-2—5 to 19 percent blasts in the blood and 10 to 19 percent blasts in the marrow.
In most healthy individuals, blast cells represent less than 5 percent of developing marrow cells.
CMML Incidence
CMML affects approximately 3 out of 100,000 individuals in the United States each year. The median age at diagnosis ranges from 65 to 75 years. Seventy-five percent of patients are older than 60 years at the time of diagnosis. CMML has been reported in a small number of older children and younger adults. There are approximately twice as many male CMML patients as female CMML patients.
Signs and Symptoms of CMML
Signs and symptoms may include
• Weakness and fatigue due to “anemia” (a decrease below normal in the number of red cells and, consequently, in the hemoglobin concentration of the blood)
• Petechiae (pinhead-sized sites of bleeding in the skin), bruising and bleeding due to “thrombocytopenia” (low platelet counts)
• Infections due to “leukopenia” (a below-normal concentration of white cells)
• Enlargement of the spleen and/or liver
• Feeling of fullness below the ribs due to spleen enlargement.of a single cell that multiplies uncontrollably. In CMML the change affects the normal development of a type of white cell called a “monocyte.” Monocytes arise from immature blood-forming cells called “myeloblasts” and “myelocytes.” In CMML, the myeloblasts and myelocytes accumulate in the marrow and in other organs, and interfere with the normal production of monocytes and other types of blood cells, including red blood cells (which carry oxygen to all the tissues of the body) and platelets (which form plugs to help stop bleeding after an injury).Diagnosis of CMML
Patients who are eventually diagnosed with CMML may seek medical attention at first because of physical weakness, infection or unexplained bleeding. A diagnosis of CMML usually cannot be confirmed with one lab test result that shows abnormal blood counts. The diagnosis can only be confirmed after a patient has been monitored for a period of time with repeat lab tests to rule out
other forms of myelodysplastic syndromes (MDS) and myeloproliferative disorders (MPDs).
Generally, the tests used in the diagnosis of CMML include additional blood tests and bone marrow
• A persistent elevated monocyte count in the blood (greater than 1,000/microliter [1,000/μl] of
blood)• Less than 20 percent blasts in the blood or the marrow
• Signs of abnormalities in one or more of the types of precursor cells that develop into red cells, certain types of white cells or platelets.
Other diagnostic tests for CMML may include
• X-rays and/or computed tomography (CT) scans of the abdomen and pelvis to detect the
enlargement of the spleen and liver• Cytogenetic tests that confirm the absence of the Philadelphia (Ph) chromosome or the
• Blood and urine tests to detect elevated “lysozyme” levels. Lysozyme is an enzyme that functions as an antibacterial agent and is found in saliva, tears and some immune cells such as monocytes
• Blood tests to detect elevated levels of proteins such as “lactate dehydrogenase” (LDH) and “beta 2-microglobulin.” LDH levels may become elevated when there is tissue damage in the body. Beta 2-microglobulin levels may increase as a result of increased production or destruction of white cells,
BCR-ABL gene associated with chronic myelogenous leukemia (CML)due to inflammation or to certain types of cancer.Genetic Mutations.
Twenty to 40 percent of CMML patients have chromosomal abnormalities. About 1 to 4 percent of CMML patients have an abnormality called a “translocation” (a piece of one chromosome breaks off and attaches to another chromosome, which can lead to the development ofan “oncogene” (cancer-causing gene). In CMML the translocation involves the
Other chromosomal abnormalities associated with CMML, which may be tested for only in a research setting, include
• Monosomy 7 and trisomy 8, which are the most common chromosomal abnormalities in CMML
patients.• Mutation of a specific gene within the gene family known as
“RAS,” such as the K-RAS or N-RAS genes. RAS genes and the proteins they encode regulate cell growth. When a mutation of a RAS gene occurs, cells multiply uncontrollably. This type of mutation occurs in about 35 percent of CMMLpatients.Treatment of CMML
For most CMML patients, the disease is treatable, but not curable, with currently available therapies.
Patients are advised to
• Seek treatment from a physician who is experienced in treating CMML or from a physician who is in consultation with a center or physician who has experience treating this disease
• Discuss the most appropriate treatment for their situation with their physician.
The type of treatment depends on various patient factors, including the
• Nature and extent of symptoms
• Need for rapid disease control• Eligibility for stem cell transplantation
• Overall health and quality of life.
Drug Therapy for CMML.
etoposide (VePesid
There is no one standard treatment for CMML. Treatment for previously untreated or relapsed CMML patients may include standard-dose or low-dose cytarabine (Cytosar-U®),®) and hydroxyurea (Hydrea®). Treatment with these agents has been useful for a small number of patients.Azacitidine (Vidaza
The small number (about 1 to 4 percent) of CMML patients who have the
myelogenous leukemia (CML) and some other diseases.Outcomes for CMML Patients
CMML is a difficult disease to treat. The recent WHO reclassification of CMML is expected to lead to a greater understanding of this disease and to the development of more effective treatments. All patients are advised to discuss survival information with their physicians. Keep in mind that outcome data can
show how other people with CMML responded to treatment, but cannot foretell how any one person will respond.
Many factors influence patient survival. Unfortunately, lasting remissions are not common. The reported median survival of individuals diagnosed with CMML is from 12 to 24 months after the initiation of treatment. In general, statistics may underestimate survival to a small degree since they may not reflect
Factors that may indicate a less favorable outcome include
• Severe anemia
• High blast percentage
• High total leukocyte (white cell) count
• High LDH level
• Larger spleen size.
Approximately 20 percent of CMML patients have disease that progresses to acute myelogenous leukemia (AML).
Wednesday, September 8, 2010
Phone call of Wednesday, September 8, 2010
So much has happened since my dad's original diagnosis. Hopefully throughout my daily blogs, I will catch up on the years between.
My dad calls me every night without fail, around 8 p.m. The night's he doesn't call I get so worried but he has always stated to me that he doesn't want me to worry, not to call, and I don't want to pick the phone up and call him as he tries to rush for the phone and because of issues with balance, could fall. Puts a person into such a predicament.
Dad now has blood draws weekly. This started approximately 7 months ago when a new oncologist finally came on board and took some concern into my dad's CML. My dad thinks the world of him because he actually talks to him about what is happening. Prior to this, dad's GP (general practioner) was doing blood draws on him about once a month, but nothing more was ever done.
Dad had gone through some blood transfusions a few times over the course of the past few years but nothing like what has been happening since his oncologist has taken an interest. These transfusions were taking place about once a month at the start of their new relationship. It then went to every 2 weeks and for the past month and a half, dad has been receiving blood transfusions, a bag of platelets and "other stuff" on occasion, but he doesn't know what that is.
It is scary to hear how all of this has transpired so quickly, but then maybe it hasn't because he didn't have a specialist who cared about him. Reading more about CML and how the white blood count is high in patients the need for transfusions and platelets, knowing that the white blood cells do not do what they are suppose to in a CML patient, makes me wonder how much time my dad has left. He is suffering, and throughout the course of the past many months, has complained of how his stomach is so upset (in which we now find that when he has his transfusions this stops the pain for a few days), how tired he is, yet he does not sleep, has fallen, has not appetite and now in the past few weeks has begun developing nose bleeds.
Living almost 2,000 miles away, there is a feeling of hopelessness ... how does one try to give hope to someone who has meant so much in their life and keep their spirits up? The other feeling of hopelessness lies in the fact that although I have my dad in an assisted living facility where he gets meals that he has to go to a dining room to eat, he cannot get into a nursing home because of the "rules and regulations" that are in place. He needs help, he needs to be by his wife whom he has been married to for almost 60 years and yet the systems do not allow it.
I only wish I could take away all his pain.
My dad calls me every night without fail, around 8 p.m. The night's he doesn't call I get so worried but he has always stated to me that he doesn't want me to worry, not to call, and I don't want to pick the phone up and call him as he tries to rush for the phone and because of issues with balance, could fall. Puts a person into such a predicament.
Dad now has blood draws weekly. This started approximately 7 months ago when a new oncologist finally came on board and took some concern into my dad's CML. My dad thinks the world of him because he actually talks to him about what is happening. Prior to this, dad's GP (general practioner) was doing blood draws on him about once a month, but nothing more was ever done.
Dad had gone through some blood transfusions a few times over the course of the past few years but nothing like what has been happening since his oncologist has taken an interest. These transfusions were taking place about once a month at the start of their new relationship. It then went to every 2 weeks and for the past month and a half, dad has been receiving blood transfusions, a bag of platelets and "other stuff" on occasion, but he doesn't know what that is.
It is scary to hear how all of this has transpired so quickly, but then maybe it hasn't because he didn't have a specialist who cared about him. Reading more about CML and how the white blood count is high in patients the need for transfusions and platelets, knowing that the white blood cells do not do what they are suppose to in a CML patient, makes me wonder how much time my dad has left. He is suffering, and throughout the course of the past many months, has complained of how his stomach is so upset (in which we now find that when he has his transfusions this stops the pain for a few days), how tired he is, yet he does not sleep, has fallen, has not appetite and now in the past few weeks has begun developing nose bleeds.
Living almost 2,000 miles away, there is a feeling of hopelessness ... how does one try to give hope to someone who has meant so much in their life and keep their spirits up? The other feeling of hopelessness lies in the fact that although I have my dad in an assisted living facility where he gets meals that he has to go to a dining room to eat, he cannot get into a nursing home because of the "rules and regulations" that are in place. He needs help, he needs to be by his wife whom he has been married to for almost 60 years and yet the systems do not allow it.
I only wish I could take away all his pain.
The reason to start blogging
I decided to start this blog not only so other people who have been dealing with CMML (Chronic Myelomonocytic Leukemia ) with a loved one understand some of the changes that take place in one's life, but also so my children have a better understanding of their grandparents.
I remember in 2006 when I received a phone call that my dad's kidney's had shut down. With living in the U.S. the need to grab that first plane was imperative. There was no indication as to why, but to be by my mom's side who was ailing from 2 major strokes, I had to get there immediately.
No matter what happens to one's parents, you always have questions and more questions of doctors. The one joy was I was also dealing with the Canadian medical system in which specialists are not always there for the type of diagnosis, but if there happens to be one, you are lucky if they will take the time to talk with you or for that matter, even help you after a diagnosis.
It was during this time that it was discovered my dad had CMML, after blood work that was completed and then the need to do a bone marrow tap. It was confirmed. Chronic Myelomonocytic leukemia are uncommon blood cancers that have characteristics of two other types of blood cancers called "myelodysplastic syndromes" (MDS) and "myeloproliferative disorders" (MPDs). For this reason the World Health Organization (WHO) has classified CMML as "mixed myelodysplastic/myeloproliferative diseases." This is a relatively new (2001) classification that is expected to lead to greater understanding of these diseases and to the development of more effective treatments. CMML was previously classified as myelodysplastic syndromes (MDS) subtypes or atypical chronic myeloid disorders.
So the next questions were how long has he had it, what is his survival rate, what will be done for him, and a rash of other thoughts that went through my head at the time. Dad had for about a year and a half had red blotchy marks on his face and other areas of his body that his general practioner had stated was a "rash" and was treating it with a cortisone creme. Who would have realized that this is one of the symptoms of CMML.
Here is where my story will start. Of how a loving man who was 6 feet tall and weighed well over 250 lbs. is as of this day approximately 130 lbs. and his feelings of hopelessness, that surround myself and my mother.
I remember in 2006 when I received a phone call that my dad's kidney's had shut down. With living in the U.S. the need to grab that first plane was imperative. There was no indication as to why, but to be by my mom's side who was ailing from 2 major strokes, I had to get there immediately.
No matter what happens to one's parents, you always have questions and more questions of doctors. The one joy was I was also dealing with the Canadian medical system in which specialists are not always there for the type of diagnosis, but if there happens to be one, you are lucky if they will take the time to talk with you or for that matter, even help you after a diagnosis.
It was during this time that it was discovered my dad had CMML, after blood work that was completed and then the need to do a bone marrow tap. It was confirmed. Chronic Myelomonocytic leukemia are uncommon blood cancers that have characteristics of two other types of blood cancers called "myelodysplastic syndromes" (MDS) and "myeloproliferative disorders" (MPDs). For this reason the World Health Organization (WHO) has classified CMML as "mixed myelodysplastic/myeloproliferative diseases." This is a relatively new (2001) classification that is expected to lead to greater understanding of these diseases and to the development of more effective treatments. CMML was previously classified as myelodysplastic syndromes (MDS) subtypes or atypical chronic myeloid disorders.
So the next questions were how long has he had it, what is his survival rate, what will be done for him, and a rash of other thoughts that went through my head at the time. Dad had for about a year and a half had red blotchy marks on his face and other areas of his body that his general practioner had stated was a "rash" and was treating it with a cortisone creme. Who would have realized that this is one of the symptoms of CMML.
Here is where my story will start. Of how a loving man who was 6 feet tall and weighed well over 250 lbs. is as of this day approximately 130 lbs. and his feelings of hopelessness, that surround myself and my mother.
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