[Caroline]

Thank you Lindajo.

I am going to ask for my Dad’s blood test results next time we have an appointment… in 2 weeks. Then I will get to work studying at http://www.aplastic.org and try to learn how to make more sense of this. It gets so complicated for me. I am sure that most of us feel the same way.

Caroline

[Caroline]

Jim,

Congratulations !!! You are an inspiration. Thank you for sharing your progress report. We all expect to hear many more milestone stories from you.

Keep It Up
Caroline

[Caroline]

Hi Neil,

No, Dad does not take any other medications….only Eprex which he began 2 days ago and his heart medications which he has taken for over 15 years. They shouldn’t be causing vomiting after all these years.

In all of the reading I have done regarding MDS and now CMML, I didn’t find vomiting to be a concern.

You are probably right, it may have to do with a different condition.

We’ll mention it to the doctor and see what he has to say. Maybe there is more going on with him than we know.

Thank you

Caroline

[Caroline]

Di & Scott:

My prayers are with you.

God Bless.

Caroline

[Caroline]

Patti:

Alzheimer’s is a cruel disease, isn’t it? My husband’s aunt died from it last year. We helped take care of her. Now another one of his uncle’s just got placed in an Alzheimer’s Unit in a nursing home last week because he runs away and his wife isn’t strong enough to chase him anymore.

We always vowed to homeschool when the kids were little too but unfortunately, we never got the support. We both have really small families and not alot of a social life so the kids felt really left out. So we enrolled them in a school up the street and I volunteered there half days until the last one finished grade 8. I also got a part-time paid position as teacher’s aide in the same school. It helped alot having me be there. I was surprised but none of them were ever ashamed. In fact, they used to argue over whose class I got to go into. I quit the job when our youngest moved onto highschool. Still, I wish I had stuck it out and homeschooled until the end.

I agree about others’ stories being inspirational. I find that I gain strength from other peoples’ strength. It also shows me that there are folks out there who are alot worse off than I am and it humbles me and makes me stop feeling sorry for myself.

My parents also don’t like doctors. They go because physically they need to now but by the time they get home, they sometimes change the course of therapy. They are so cute! Now, Dad is being pretty serious though. This is huge for him and he is following instructions to the letter. He got his first Eprex shot thismorning. I am going over tonight to knit with Mom and keep an eye on him. He was told that he may get extremely achy tonight.

I love sewing. My dream has always been to sew my girls’ wedding dresses and bridal party dresses. I still need more practice though. Lately I have been quilting. I can put it down and pick it up later on. I don’t have a sewing room so I have to sew at the kitchen table. That gets to be a hassle when I don’t have alot of time at once to dig into a project. I spend more time setting up and moving things to the side so that we can eat dinner. Hence, I don’t sew as much as I would like to. I also do alot of knitting, crocheting, cross-stitching and spinning both for my family and to sell.

My family is Austrian. We call our grandparents Opa and Oma. My kids have told me that they would like me to be Grandma when they have children because there will only ever be one Oma for them…my Mom. She was pretty honoured by that. I told them that’s fine…I will be Nanoosh and Dad will be Hickpappy. So, that is how we sign their Birthday cards now. It burns them up but Peter and I laugh our heads off. We always try to keep laughing…cuz when you stop laughing…you start crying.

Caroline

[Caroline]

Hi Luke and Margaret:

We are in Cambridge. I mentioned Vidaza to our Oncologist’s nurse as well. She did not seem at all familiar with it. I wonder if it is only available in the United States. Do any of you Canadians know if Vidaza is available here?

Caroline

[Caroline]

Hi Donna,

A fellow rambler. In person I am as quiet as a mouse but give me a keyboard……

I am so very sorry for what you have been through!!! Like I said before, we all have a story to tell. Somehow each thing that we go through is supposed to be a lesson for ourselves or for someone else but how do you justify some of the things which we have to endure? I cannot imagine myself having to have gone through what you have and yet…you made it Donna.

I don’t know what your beliefs are and I certainly would never impose mine on anyone. I believe that when someone passes on, we can continue speaking with them and they help us from Above. I have a whole host of loved ones and friends who help me through the day. That’s not to say that I don’t miss having them all here with me terribly. I do!!!! Sometimes I get pretty frustrated but I suppose if I didn’t have my Faith to lean on, I would probably miss them all more and I would feel more helpless.

My Mom is Oma too. My Dad is Opa.

I also plan on buying the Everybody Loves Raymond DVD’s…after I collect the rest of the Little House on the Prairie series. I only own one season so far…8 left to go. I love that show too. Very wholesome and it kind of fits in with the way we run our house. We try not to purchase anything that we can’t make by ourselves. It is fun…time consuming…but fun.

A Good Day To All,
Caroline

[Caroline]

Patti,

You run a Traditional house. I do too.

You have your hands full, Patti. 3 children under 7. Mine were 3 under 3 years old. My children are old enough to help out now, thank God. 2 of them have taken a year off university so they are working but they are here to help us out the rest of the time. You are still needed around the clock. I found those days hard enough when there were no illnesses, nevermind when I was needed elsewhere. I tried homeschooling but ended up sending them up to school. My husband also has a home-based business. Now I have one too selling yarn on-line. It is a pleasant diversion.

You will never be given more than you can manage. I know when you look at the entire picture, you think…Wow, I can NEVER handle all of this. But, I think we are matched to our circumstances according to our strength. I am guessing that you are mighty strong. I’m not trying to be nosy, but I assume that you don’t have a father in law ?

My parents will NEVER share with me unless I pry. They are very Old School European and their job is to protect me from the world….while I am trying to protect them. It can be very interesting listening to some of our conversations as they skirt issues and I press for details. That is why I likened us to the people on “Everybody Loves Raymond”. We sound just like them sometimes but in a loving way. In the end though, I wouldn’t ask for anyone else to be my folks. We have an understanding and somehow this all works for us.

Have a nice day everyone,
Caroline

[Caroline]

sdrake

My Dad was diagnosed with CMML last week after a BMB. He had MDS for 2-3 years before that. He is 79 years old. In the summer, he had an ultrasound of his spleen taken and it was normal.

I only know his hemoglobin results so far. They are at 99 right now and that is after a blood transfusion 2 months ago. Actually, the hemoglobin is the only number that the Oncologist ever tells him. I noticed that you said that your Dad’s hemoglogin was at 7.9. I wonder if where I live, the doctor would refer to that as 79. We live in Ontario. Our Dr. never uses a decimal number. He said that he starts to worry when the hemoglobin drops below 100.

Dad starts Eprex tomorrow or Friday.

I haven’t been going to his appointments so far as my Mom was going along with Dad but over the past while, both have become very ill and I have included myself in their healthcare plan.

At our next appointment, I will ask for more of Dad’s test results and I will try to share them with you. You know alot more about your Dad’s counts than I know about mine.

Caroline

[Caroline]

Oh Boy,

I think that everyone is scared in their own way and sometimes it comes out by bickering. We need to take a step backwards and everyone’s offended feelings need to be re-assessed. We all have searched and have found each other. I think we must all try to understand that none of us have the answers. We are all looking for peace from the fear and the unknown and we need the support each other to get through this. Speaking for myself…this is the hardest thing I have ever gone through. I am scared to death. Besides Dad’s CMML, Mom has a life threating conditioning which will kill her very soon if she doesn’t have surgery ASAP. I cry day and night when I am not actually being distracted by running a house and a family. I need you guys. Please don’t take things wrong.

Patti, I appreciate your input. I did not take your comments regarding your MIL being at the end of her disease to include my Dad. I already know that his disease transitioned this past summer so his CMML is very new to him. His Oncologist sees him every month and monitors him closely. I was trying to tell you that Dad mentioned his numb hands while we were filling out his Pre-Op Questionaire the other day for Kidney Surgery at the end of October. I found it odd that when I got home from his house and read this forum, you mentioned your MIL’s hands. Both people could very well have different reasons for their symptoms but it seemed odd so I decided to share my news to you all. Dad’s hands are better these last few weeks since they reduced his blood thinners. And yes Patti, Dad is able to shake life back into his hands and fall asleep again but shortly afterwards they wake him up and the cycle begins again.

If you, Patti, consider that you MIL is at the end, then that is your peace. I wish I was the type of person who could rest and allow things to take their course rather than be the type of person who I am who keeps looking for new answers even after I have been told what the real answers are.

I am thankful to every one of you who has supported me for the past week and a half. I am an only child and I felt like my life was ending when I first found out that Dad’s ‘little blood problem’ was CMML. I have a husband and 3 teenage children but I am still very attached to my parents. If you watch ‘Everybody Loves Raymond’…we are just like them!!!! We live 2 blocks from my parents and we see them everyday. My MIL lives a mile away and we see her everyday too. We don’t socialize much. I needed to find friends outside of my family who I could talk to and share these terrified feelings with and I feel that God led you to me. I don’t get offended by anyone who is trying to help me or give me advice. Sure, some things are going to sting. I feel overwhelmed with fear when I read some of your stories because I know that down the road, my family will have to experience those same trials but I also know that you are all there and will do your best to help me through them.

Shirlsgirl….I thank you from the bottom of my heart for being sensitive enough to care about how I, a complete stranger, may have taken a comment. In this world where every man is for himself, I find myself in a warm, caring environment.

Elle…I think the way you do. When I find something that looks odd or suspicious, I start looking for the answers. Alot of people call me over-protective but it is just my nature. I have insisted that Dad tell his Oncologist about the numbness in his hands and he said NO…so I decided that I will mention it myself when we go. He gets his first Eprex shot on Thursday or Friday and Mom is taking him. I get to go the next time so I will mention it then. In my head, I NEED to ask.

We all have different situations and backgrounds. Somehow we all ended up here. In alot of our cases…WE are all we have as support. I know that is my case.

Sorry I babble so much. I am generally VERY quiet but I type quickly and I have alot on my mind these days.

Let’s continue our mission of helping each other and those we love.

Caroline

[Caroline]

Patti,

I just asked my Dad some questions about his numbness.
It was much worse a few weeks ago. The only thing that has changed over the past few weeks is the dosage of his blood thinners. He used to be on a very high dosage and they cut him down to one third of his regular dosage. Dad has been on blood thinners for many years because of a heart condition. He says that the numbness is not as frequent now but it still affects both hands daily always when he is at rest.
Still, I will ask at the next Dr. visit and let you know what he says.

Caroline

[Caroline]

Hi Patti,

I don’t have any answers but I had the same question. When I spoke to my Dad yesterday he told me that lately both of his hands go numb while he is sleeping. He said that it isn’t a tingling or pins and needles like what you would find with Carpal Tunnel. He said that his hands just go dead. He has to get up several times every night and shake life back into his hands.
I was planning to mention it to Dad’s Oncologist at our next appointment. If Dr. says that it is MDS related, I will let you know.

About the denial…..my Dad and Mom told me for 2 long years that Dad has a ‘little blood problem’ when he had MDS. I am 42 years old. Last week I was at the doctor’s appointment with Dad when we were told that his blood has changed and he now has CMML and needs medicatiion. He has become extremely quiet and he seems much more exhausted than before….but we still don’t discuss it. He lays down for about 18 hours a day sometimes even more.

Caroline

[Caroline]

Very True Suzanne.

The Doctors have a huge responsibility not only in correctly diagnosing and treating patients with MDS Diseases but they must also always be studying further and keeping current with changes and new developments. My hat goes off to them.

A nice day to all,

Caroline

[Caroline]

Lindajo and Jody I will try all of your suggestions. I like the snowflake analogy as well.

Again, Thank You All.

I will ask for as many results as they are willing to give to me when we go for our next appointment which should be Thursday or Friday when Dad gets his first Eprex shot. On the phone today, the Oncologist’s nurse was most helpful. Now that she has permission from Dad to give me information, she includes me in the loop and said that she will telephone me every time she telephones Dad and Mom so that we all get the same information. That was such a relief!!

You are all so helpful. I don’t know how to thank you. I don’t mean this disrespectfully towards my friends but I have gotten more concern from the folks in this forum and from some of my customers who order from my store over the internet than from close ‘friends’ who have known my family for many years. I wonder why that is? I have one dear friend who acted as though she was bored listening to me when I was telling her about Dad. The very next morning she emailed me one of those tear-jerking emails about love and loss. Let me say, her timing could not have been worse. Have any of you encountered the same thing? I found that the same thing happened when my daughter had a horseback riding accident and was brain injured for 2 years. Maybe it is human nature.

Caroline

[Caroline]

Thank you Ellie.

I was told also that there will soon be new milder medications released which will be easier on Seniors. Let us hope that we will see those drugs in action.

Thank you for your prayers. I will pray for you and Glen all the rest of you as well.

Caroline

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