HEP C and CLL

[Tumbleweed]

My husband is 57, has CLL (Chronic Lymphocytic Leukemia) and HepC from IV drug use in the 60's.  His gastro does not want to try to treat the Hep C, says it's more important to deal with the CLL.  A yr. ago, they remove his spleen due to a platlet count of 4.  Had a minor sinus surgery (2 wks. ago) and due to no clotting factor he almost bled to death.  The protein in his blood draining to his stomach made his amonnia level go to 178.

[MajNeni]

Hi, and welcome back,
sounds like you had a terrific time.  Nothing like feeling normal for a while during tx, right?  That hubby is a keeper for sure.
Mine and I spent a couple of hours cleaning up in the yard today; oooooh, it felt so normal, so regular.  
The tx clock keeps on ticking, whether we're preoccupied with it or not.
Maj Neni

[layla]

I am so glad to hear things went well. Your story brought tears to my eyes. My husband too has been great and I know exactly how you feel. I agree doing normal stuff seems to be the best thing for me too and helps me forget the HCv for awhile. Welcome back. LL

[iwillwin]

Tears of joy are the best thing for you and all of us. Your husband seems like he is your main ray of light for you, on your way down this road.    But I do miss talks with you !!!!!
                    be good stay strong and keep smiling
                            Your freind   Jim

[lackalustre]

thanks so much for the sharing. i love the articulation here on this site.   most of our families are so concerned about us. its almost harder on them than us to see us so ill
    my friends and family are so glad to see me doing more now.  i feel so blessed to have support from them and all of u here.

[terriri]

Hi Downthisroad, thank you for sharing. Your words & the loving feelings they projected were just beautiful.
All my best!

[GwithHepC]

You do sound truly blessed to have such a supportive husband; and no doubt he is blessed to have you.  I am so happy for you that you enjoyed your vacation.  What you shared is truly inspirational; I have not started treatment yet, but you have given me hope for when I do.  Thank you! And welcome home.

G

[DownThisRoad]

I thought this would be a good place to post since the question and comment from this thread is repeated in another. Tumbleweed, I am so sorry to hear about your husband's illness and struggle that you both are going through. My thoughts are with you both.

I am back from my wonderful cruise and vacation with my husband. As some on this forum may remember, I was really hesitant about going out on the water for 8 days and getting to far away from my comfort zone, but I decided to do it.  I talked myself into it by saying if I needed extra rest and didn't feel well at all, I would just be able to lay around either in the cabin (which would of been a real bummer but very comfy) or lay around on deck in a comfortable lawn lounger.  I wasn't ill the whole time although I did have to give myself some quiet time one of the days and stay inside and just sleep.
The other days though, I was able to really relax, swim everyday, eat tons of good food (oh those desserts were so awesome), take long walks around the ship, get plenty of exercise and fresh air, and enjoy myself.  It really made me feel good to get out and go.  I am so very happy that I went.
My point is this, even on our treatments we are able to go and do things like before.  Maybe not in the initial stages of starting our treatment and taking the meds but you can carry on at some point with a normal life.  Unless you are so ill that you can't make it out of your house (which I was a couple of times in the beginning of my treatment) go and do things that you enjoy.
I was very skeptical about going on this trip, but I didn't want to ruin a good time to get away. My husband has been taking care of me, working hard and he so very much deserved to go on a this trip.  We had a very nice time together.  We had beautiful formal dinners each evening, got off the ship to see the Mexico islands, shopped, ate and well uh, even danced a couple of nights until about 1 in the morning.

I could see how much love that my husband has for me and shares with me.  A couple of times when we were dancing, he held me close and said 'you keep dancin honey, everyone is watching. You look so much better and I can tell how much better you feel. I'm so proud of you'.  I had a huge lump in my throat and tears in my eyes because when he said that to me, it flashed into my mind the old saying 'dance like no one is watching'.  I also remember when I was so down and ill from the medicines, I said to myself all the time 'keep dancing' it WILL get better.

My virus is undetectable and I'm on week 31, this weekend.   As many times as it ran through my head that I wanted to stop the meds and stop all the madness, I am so glad and grateful that I continued.  I could have NEVER started treatment or continued treatment without the advice, support and knowledge from all of my friends here.

I've truly missed everyone on this forum. I am blessed.