I've posted several times on this forum so won't go into wife's Dx. I lost both my mother in 85 and father in 86 to cancer so am not new to having a love one with these problems. I had a very bad attack of depression last Sat. night thinking about my wife and the chance that I may lose her. She is doing very well right now and plays it all down doesn't what anyone to know. She's gets new bruises almost everyday because she won't slow down. Prednasone might have something to do with that. I love her very much and believe that she is a gift from God. We have a very good marriage though it has not been easy at times. She says we have a forgiving relationship and I believe that to be true. I have 27 years of sobriety and she stayed with me though the drinking years and the first year of sobriety when I was gone all the time working or going to meetings.
P. S. I don't spend time being depressed so this was scary for me.
Wife's platelets or up for first time sense this all started she had dropped to 34000 and stayed there for two weeks today it is up to 40000. Ya! I hope this means that the Prednasone has stopped the attack on her red blood cells by her autoimmune system. She has one more week of Prednasone than the hope is she can start on a drug that is suppose to help her body repair the bone marrow if it can.
I'm glad your wife is responding.The numbers are still mumbo-jumbo to me.
My husband has been having a hard time with the anxiety about my being sick. Depression has been a part of his life for at least 20 years, so I don't want him to fall into the balck hole. He also has been sober for a number of years, and I am thankful for each sober year.He has spent hours making a wonderful Halloween mask, an owl.
It's just the fatigue thing with me. Our grandson just was retrieved by his parents (thankGod).I'm too tired to keep up with a 2 year old for long. I suppose I resent not having enough zip to chase him, fix dinner and change the beds.Right now, I might be able to change the channel.
It does help to read what others have happening in this CMML journey.
MaryCarol
The numbers or a way of judging whether things or working right. In my wife's case her first sigh was low Hemoglobin (red blood cell) and was refused by blood bank. When she first went to Dr for this they ran some simple tests found nothing sent her home. Than she started bruising easy and had swollen angles with bruises around angles red spots like rashes on angles again no injury so no reason for this. Red rash was (Bleeding) She also had night sweets which we wrote off as heat flashes that just won't quit. That's when I told her I was scared for her and asked she see Dr again. This time her platelets where down also to 51000 Should be 150000 to 450000. These or what cause clotting in the blood so reason to be concerned. Her MD sent her to a Blood specialist at the cancer center. There they repeated the blood test and ran bone marrow bi Platelets where 47000. Than a week latter it was down to 34000 at around 20000 to 15000 they have to transfer platelets to keep you from bleed for no reason at all. These number tell Dr that they need to look for a cause as this can be life threatening. There can be lots of reasons. In wife case her autoimmune system was attacking her red blood cells. So reason for low red cell and platelet numbers, her monocyclic or one of the white blood cell was very high meaning her autoimmune system was unbalanced. Anyway she was Dx with early stage CMML even though the Dr latter told us that her treatment was to prevent it from becoming full blown CMML or AML. If she had not gone to Dr when I asked it could of been much worse. Most of us receive early warning that something is wrong but we play it down as my wife wanted to do and still does if asked how she is doing. That does not make them bad or wrong it is normal, it will go away and most of the time it does. We all go though life with a pain that scares us and must of the time it is nothing and after it stops hurting it feels better and is forgotten even when it comes back over and over. I have a friend that lived with pain that would of put most people down. He was busted up very badly by a drunk driver who drove into back of his stopped car at 90 MPH. When I was working with him I would hear him say,"boy that will feel better when it quits hurting." I know what that meant and we would both LOL and go on. He had learned a way to handle the pain and didn't let it effect his life. He retired and bought a real large motor home and wife and him or gone all the time.
I to have had the attack of depression over my fear of what lays ahead for my wife. This to is normal and I'm looking at the future and I have no control over that so it does me no good or her. Another let go and let God as I'm powerless over what is to come and I need to be glad with the time we have left to gather no matter how long..I'm glad for the time that my wife and I have spent to gather and hope and pray for more of it. I think him each and every day for her and her love, as she is a gift to me. I'm grateful for God's gift of sobriety as I'm sure your husband is. Ask him if he would like to exchange message on here. I'm sure I would enjoy hearing from him. I'm a retired rail roader spent my last three years running a scale weighing cars and stuff.
Update new round of Bloodwork today and platelets or at all time low after going up to 40000 for two weeks it dropped to 32000. She was suppose to go in for Chemo end of this week but we found a new articled about side effects on chemo Rituxan (Tituixmab) that scared us into not going there. Wife canceled her round of chemo and now has a meeting with Dr on the 19th to go over which med or chemo to us. Address for article from April this year is.
Tomorrow wife and I will get to talk to Dr about Treatment opinions and this is scary. Wife showed me that she is having little red bleed spots on hands and arms, this is new it has always been on legs or angles in the past. I tried to not let her see how scared this made me. But I'm glad that she felt she could share this with me. She is so shy at times it is hard to know what is really going on with her. I heard her talking to sister on phone and she said that she is feeling very tired at times and today she said she wanted to lay down for awhile and I told her I would enjoy being with her and holding her. But she found things to keep herself busy so that never happened. I feel so alone at times, and so scared for her. She is so busy at times and I believe that the Prednasone has a little to do with that as she talks faster and is more talkative than she is most of the time. I am so scared of her being in a car crash or falling down as even a small injury could be fatal for her.
Puppy will be spayed next week and get her last puppy shots. She is so much bigger than when we got her and like most Boxers so loving, of course she can't stay out of anything.
The predinsone will make her jumpy.Watch for insomnia also.Todd is moody, because of course he ponder's and worry's about the outcome of all this.I find my time with him is precious so we just try to enjoy each other and make the most of it.
Hi Pinkydo123 Hang in there it's a long road. We'll pray for you and husband.
Prednasone down to 20 mg today but wife thinks she go back to 30 mg as blood work was better than, I tried to tell her that she needed to stick to what the Dr said.
We meet with Dr today also and she wants to use Rituxan as a treatment and wife doesn't know if she wants to go there. So we asked to get a second opinion, so she is being sent to Omaha Med Center. I asked Dr if delaying the treatment would hurt or not and she said it would not.
At least she is open.Everytime I approach Todd about second opinion's he seem's to clam up and shut down.I'm just trying to go over all our option's.The prednisone also made Todd a bit agitated so if she is doing ok at 20 that's great.Prednisone can habe some nasty side-effects in the long term so I don't think the Doc's like to use very high doses of it unless they have too
Thanks pinkydo123.
Joy's mother will get to spend Christmas with Jesus instead of us but she will be in our prayers. Joy and her mother where so much alike loving and caring to everyone around them. I use to enjoy listening to them as they played cards as they would both be talking at the same time and finishing each other sentences. There thinking was so in tune to each other it was a real gift. It was so sad to see what altimers did to her. It took everything away her freedom, her sparkle and in the end her health.
Update: Yesterday after funeral service for her mom my wife gave me a scare. Someone said to me your wife is turning red. I went over to check on her and her neck, face and arms where red. I was afraid she was bleeding under the skin. But I have seen these bleed spots before on her angle and this was different not as red. She has been having problems controlling her body temp and almost always says she feels hot even when I'm cold. I realized it was heat related and told her to come set down and cool off. With in 10 min of setting down her color began to return. It happened again today after church but not as bad. Tonight we went shopping and she had a little of this on the back of her neck. She said she was feeling hot and had took off her coat and it didn't get any worse. We are going to Omaha tomorrow for second opinion so I well ask about this if she does not. Has anyone else had this happen? She is always kicking off the covers now and that use to be me. She does have some new bleed spots but they are very small and only three of them that I have seen.
Well we are still up in the air after visit to Omaha. They did another bone marrow bio this is second one sense Sept. Omaha Dr also said it is CMML but needed to nail Dx down a little better so BMB to check on blasts and to see if any change in bone marrow. Dr said that they would probably start wife on Dacogen or Vidaza after we get results of BMB. Lincoln Dr wanted to use Rituaxan to treat immune problem but Omaha Dr said that if wife does have CMML that the immune problem would return as CMML is probably causing it and needs to be treated first. So we now have two different Dr saying two different things and no ideal where to go so are waiting for the results of bone marrow to see where we go from here and hope they can stop tossing around different Dx's.
Nothing new to report but thought I would type what is on plake that I bought wife for Christmas it hangs on wall in dining room.
I hold everything when I hold you in my arms.
Grog,
That is beautiful!! Cheers to this New Year and for your wife to be Cured! Stay determined, nicole
PS. My parents have this hanging at home,"We may not have it together, but together we have it all" ![]()