ANOTHER TRANSFUSION

marines911
marines911 Member Posts: 68
edited March 2014 in Breast Cancer #1
Here we go again with another blood transfusion tomorrow, this time for the low RBC. Pain patch is not enough at current strength and now ONC increased it to 150 on the Fentanol patch. My wife started to experience an involuntary leg twitch that may be the result of the patch. Things are really getting scary, becuase she could not even walk from the car to the hospital today when we were getting her type and matched for the transfusion. We had to use the wheelchair once we got in and when we left. I have started to teach my soon to be 16yr old how to drive, because my wife is not in any condition to drive and my mother-in-law stays at home with the kids, and I know that with all the sports and school we are going to need that extra driver.

I have a very personal question, but I have to know how to handle a situation that I have been struggling with for about 6 months now. I adore my wife and making love to her is like the first time, everytime. My heart races and I get all giddy in the stomach, but I know that it is very painful (back and joint pain) and difficult for her. I want to say "no" so that she does not have to go through any additional pain just for me, but at the same time I don't want her to feel rejected or anything negative at all. I have prayed and really don't feel comfortable talking to anyone else that is not going through I am right now. This is tearing me up inside and I don't know what to do. Last night we made love and I was as gentle as I could be and it was so difficult for me not to cry when I can hear and see her in so much PAIN, and I thank GOD that he has blessed me with someone so beautiful, loving and giving that I wish I could make it all go away.

As always any and all advice is welcome and appreciated. I will update you all on the status of the trial, but it seems that we have to wait for another pathology department to release the block (sample) to UCLA, just for them to turn around and send it out to their researchers to determine if my wife qualifies. As for the party, it will be a surprise for my wife when she sees some of her good friends and hopefully I can find some of her students from her first class when she was teaching over 17 years ago.

Thank you all and GOD bless,

Thomas

Comments

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #2
    The transfusion may really
    The transfusion may really help give her back some of her strength. Maybe lowering the dose can help the twitch? Not sure, just some suggestions.

    As far as sex, I would really talk with your wife about this. Let her know that you still think she is attractive, but you are afraid of hurting her and that you can be patient and wait, if that is what she wants. This was a difficult issue for Danny and me as I was only 33 when diagnosed.

    We are still strong as a couple and I am now 57. But I did talk to him about it to let him know that my lack of interest had nothing to do with him and everything to do with the treatment. Snuggling and back rubbing is veery important now...sex may have to be on the back burner. But talk with her as everyone is different.

    I am praying for you and your family.
  • webbwife50
    webbwife50 Member Posts: 394
    #3
    Love
    Tears are rolling down my cheeks after reading your post. I was in treatment and very sick for quite awile, I had no breast, no hair, and was in a lot of pain. I wanted my husband to make love to me at times, I felt like it was the only thing I had left to give to him, and for just a little while I wasn't sick anymore, I was just his. God bless you both..Alison
  • New Flower
    New Flower Member Posts: 4,294
    #4
    webbwife50 said:

    Love
    Tears are rolling down my cheeks after reading your post. I was in treatment and very sick for quite awile, I had no breast, no hair, and was in a lot of pain. I wanted my husband to make love to me at times, I felt like it was the only thing I had left to give to him, and for just a little while I wasn't sick anymore, I was just his. God bless you both..Alison

    I agree with Cynthia
    talk to your wife. Ask what is the best for her, explain what you tell us.
    New Flower
  • carkris
    carkris Member Posts: 4,553 Member
    #5
    New Flower said:

    I agree with Cynthia
    talk to your wife. Ask what is the best for her, explain what you tell us.
    New Flower

    so hard glad you can talk
    so hard glad you can talk here, i know connection and being wanted is really important.
  • sea60
    sea60 Member Posts: 2,613
    #6
    I was also very touched at your sincerity
    I can see your difficult situation. All I can say is that for me, I just wanted to hold on to normalcy as much as possible. And I would say maybe your beautiful wife feels the same way. However, if you can visually "see" her in physical pain, then perhaps you can simply tell her you desire to hold her. Write her love letters (you seem the romantic type), and do things that make her feel wanted and desired.

    I know this is a sensitive issue and ultimately, it will boil down to the two of you communicating. You sound like you share a very strong bond.

    You both are in my prayers daily. Thank you for updating us. Take some pictures of your birthday party to share. I'd love to see them.

    God's blessing,

    Sylvia
  • RE
    RE Member Posts: 4,591 Member
    #7
    Hugs to you and yours!
    Hi Thomas,

    I agree that you should be open with your wife and let her know of your concerns that you may be causing her more pain than pleasure although I am not sure that is true. I have had a lumpectomy on one side and a mastectomy on the other. My husband has seen me extremely ill, hairless, bloated, pale and sapped of any and all energy yet he still found me desirable and to me that spoke volumes. He never was rough, always gentle and always treaded lightly and would ask during love making if I was okay. His caring gentleness filled me with a love that was already strong and blossomed to become even stronger as he displayed his love for me. Sometimes I was not up to it and he would gently hold me and we would simply bask in the love of the closeness of each other. He even bought a love seat that has two recliners in it so that he could sleep with me on difficult days when I needed to be more upright then vertical so that I would not be alone. Communication is the key Thomas, tell your lovely wife how much you love and desire her and want to give her joy but do not wish to hurt her I am sure she too will be open with you. My prayers are with you and your, thank you for keeping us updated you are in our hearts.

    (¯`v´¯)
    .`*.¸.*RE´
  • marines911
    marines911 Member Posts: 68
    #8
    RE said:

    Hugs to you and yours!
    Hi Thomas,

    I agree that you should be open with your wife and let her know of your concerns that you may be causing her more pain than pleasure although I am not sure that is true. I have had a lumpectomy on one side and a mastectomy on the other. My husband has seen me extremely ill, hairless, bloated, pale and sapped of any and all energy yet he still found me desirable and to me that spoke volumes. He never was rough, always gentle and always treaded lightly and would ask during love making if I was okay. His caring gentleness filled me with a love that was already strong and blossomed to become even stronger as he displayed his love for me. Sometimes I was not up to it and he would gently hold me and we would simply bask in the love of the closeness of each other. He even bought a love seat that has two recliners in it so that he could sleep with me on difficult days when I needed to be more upright then vertical so that I would not be alone. Communication is the key Thomas, tell your lovely wife how much you love and desire her and want to give her joy but do not wish to hurt her I am sure she too will be open with you. My prayers are with you and your, thank you for keeping us updated you are in our hearts.

    (¯`v´¯)
    .`*.¸.*RE´

    GREAT ADVICE
    Thank you and everyone that posted. I did try and talk to her last month, but that is when I got the response if I did not desire her anymore. I will bring it up again, but this time I will bring it up before we are in the bedroom. I really like the other suggestions of cuddling and romantic notes and I will give her many more kisses than I already do. I pray that she will be more understanding and receptive to this conversation.

    The blood transfusion has already started to work and she is less tired and more energetic. Even though my teenage daughter scared the heck out of her during their driving lesson on the way home from the store, my wife is more aware and lucid.

    Hopefully will get the block so that UCLA can begin their testing to see if she qualifies for the trial. I will definetly post some pictures from the party and in case you want to see our family or more pictures from our wedding vow renewal check us out on facebook.

    http://www.facebook.com/home.php?#!/profile.php?id=1210202623

    Thanks again.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #9
    marines911 said:

    GREAT ADVICE
    Thank you and everyone that posted. I did try and talk to her last month, but that is when I got the response if I did not desire her anymore. I will bring it up again, but this time I will bring it up before we are in the bedroom. I really like the other suggestions of cuddling and romantic notes and I will give her many more kisses than I already do. I pray that she will be more understanding and receptive to this conversation.

    The blood transfusion has already started to work and she is less tired and more energetic. Even though my teenage daughter scared the heck out of her during their driving lesson on the way home from the store, my wife is more aware and lucid.

    Hopefully will get the block so that UCLA can begin their testing to see if she qualifies for the trial. I will definetly post some pictures from the party and in case you want to see our family or more pictures from our wedding vow renewal check us out on facebook.

    http://www.facebook.com/home.php?#!/profile.php?id=1210202623

    Thanks again.

    It's a wonder she didn't
    It's a wonder she didn't need another transfusion after the driving teen...lol!

    Seriously, a low hematocrit can really exhaust you as it is those red blood cells that cayy the oxygen that nourish and restore our entire body. Without an adequate number, we have to breathe faster, the heart pumps faster and harder, not enough cells get restored, etc. I am glad that she is feeling stronger!

    A previous post mentioned buying a cancer patient a stuffed lion for courage. I loved that idea and wished that I had a lion! If you can find one, you might consider it.

    Will check out those pix. Good luck--you are in my thoughts and prayers.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #10
    CypressCynthia said:

    It's a wonder she didn't
    It's a wonder she didn't need another transfusion after the driving teen...lol!

    Seriously, a low hematocrit can really exhaust you as it is those red blood cells that cayy the oxygen that nourish and restore our entire body. Without an adequate number, we have to breathe faster, the heart pumps faster and harder, not enough cells get restored, etc. I am glad that she is feeling stronger!

    A previous post mentioned buying a cancer patient a stuffed lion for courage. I loved that idea and wished that I had a lion! If you can find one, you might consider it.

    Will check out those pix. Good luck--you are in my thoughts and prayers.

    Thomas ... Wonderful news regarding your wife
    and her ability to cope of daily life. Blood transfusions, had a few and they do work - temporary. Nutrition is so very important - more so with our bodies and blood counts going up and now, and sideways. Hydrate, Hyrdrate and Hyrdate.

    I wish you both courage and luck, as my husband and I now fight who will drive with Alexandra next -- new drivers. Our children know it all, which includes driving behind the wheel for the very first time. I can not count the number of times, my life has flashed before me this past several months with Alexandra behind the wheel. Good Luck !!


    Strength, Courage and Patience :-)


    Vicki Sam


    Hoping and praying UCLA completes testing on 'block' very soon!
  • Pinkpower
    Pinkpower Member Posts: 437
    #11
    Glad to hear blood transf is
    Glad to hear blood transf is going well. Re the making love part. Definately keep reassuring her that you not only still love her but desire her in every way too. That was a huge misunderstanding between me & my husbands months ago. After we talked about it, I had no idea he was so scare of causing me more pain that he just didnt even try. We have come to an understading, he waits for my cue to let him know Im feeling good and im ready for some one on one loving...This took a lot of pressure off of both of us.

    Lupe

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