My husband was diagnosed Oct '08 - he had just turned 46 - as a self employed finish carpenter he stopped working and went on disablilty - it was just too much for him. He had an auto sct in Apr '09 and did well - no mouth sores - a couple of days of being sick, but home w/in 2 weeks. I did a thorough cleaning of the house, but did not go too crazy - with a 5 and 7yr old it was kinda useless! LOL!! As long as the bathroom stayed clean - I was satisfied. He remained on a low dose of Revlimid for maintenance, but 15mo later he was no longer in remission, and went back on several different chemo cocktails. He has had several tumors pop up and had his knee, shin and ankle radiated - then in Jan '12 he had a tumor removed from behind his eye the size of a golf ball - the Dr said it was extremely rare to have myeloma there and also he had very small tumors removed from his stomach - twice. His Dr said his Myeloma changed chomosonally and is now much more aggressive -he said the best bet was to do an allo sct -but he had to get his Meyloma under control 1st - it was raging by Jun, cause just making the bed his arm snapped and broke. It was quite a struggle from Jun until now - he got home a week ago from his allo sct - his brother was a match - Thank God - and he is doing absolutely fantastic! I cannot believe how well he is doing compared to all the hospitalizations (9x's from Jun-Jan) - don't get me wrong - he's not out running a marathon, but compared to his whole year last year he is doing great! He is eating, taking short walks, doing his own laundry....has had 2 follow up visits and so far so good. We will take it! I won't lie to you - it hasn't been easy, and I am fortunate to have a great support system. But the most important piece of advise I can give you is - when someone offers to help - TAKE IT!!!! I had to ask for help to clean my house - the nurse said don't go too crazy - a good spring cleaning is all it needs and then just maintain it - I sent a message on facebook and had a great response. I even did a lotsahelpinghands.com page where you assign a task such as a meal - dog walk - ride for kids - and people sign up to help - it was wonderful. I did take FMLA from work because the transplant people painted a waaaay different picture for me and said he would need me more once he was home than ever. He is absolutely fine - only needs me to drive 1 day a week back to the Dr's office. This is so much easier on both of us than I thought it would be - I expected worse - but maybe it's because the worst was last year!
Maybe you can get a parent from your daugters dance company to help with rides - and as far as the house goes - ask friends to come help with a spring cleaning - then just try to maintain it - don't go crazy over it.
Find a good friend - or a few - to be able to talk/vent/cry to - it really does help - ALOT!!!!
Believe me - you will get through it - you will find that you have more strength than you ever thought possible - and oh yeah - get out at least once a day for just a 10-15min walk in the fresh air - it does wonders!!!
Good Luck - God Bless - Stay Strong - Think Positive
Jeanne,I read your comment, this is certainly a journey and for lack of a better term an adventure. I find it encouraging to hear that your husband is doing so well after having such a hard time of things. I fear my future, not for me but for the ones who love me.
Lisa, I hope your hubby does well and see's a long and happy remission/cure.Pay attention to those who have been there or are there now, you will find hope if you look for it.
Rodney and Lisa - one thing I did forget to mention was talking with a counselor - both my husband and I speak to different counselors and it has helped us both a lot!!! I started a year after his diagnosis because I knew he needed to go - he got very depressed - and refused and I didn't know what else to do. Finally and very reluctantly he went about 3 months later and has been going ever since, and what an improvement. Lisa if you can it's a great way to help you feel a little more in control of things - at least that's what it has done for me!
I hope you and your family are doing ok - I know you mentioned your husband is having his transplant in April - I am here for you if you need any support - I will do my best.
We are in Boston now. Jeff had his first of two big chemos. Tomorrow will complete the BIG STUFF. Unfortunately, I’m sick with a cold and sinus infection, so I was unable to be with him. That broke my heart. I’m starting to feel better and am on antibiots, so hopefully I’ll be ok to go tomorrow. Fortunately, our two daughters (ages 14 & 20) are with him. So far, he’s doing well (but has caught my cold). They tested him big time and must have been ok with the results, otherwise, I’m assuming they would have held off on today. I will keep you posted. Thank you again…your message did a lot for me tonight.
I am sorry to hear about your cold - hopefully you will be on the mend very quickly!! I am glad to hear your daughters are there to keep him company. I will say lots of prayers that he does well.
I live <1hr from Boston - if you would like to meet for coffee sometime, I would love to come down and meet you. This week I am available on Thurs and Fri - next week is school vacation week - so I will be busy with the kids.
How long is your husband expected to be in?
Let me know if you are interested - it's just a hop skip and a jump away for me!!
Lisa, I hope and pray all is well, you guys should be in the middle of it I think. Keep faith that all will be good. As you know I have been there . I have started the maintenance therapy, 30 days now with the first follow-up appointment with the oncology doc yesterday . I am so relieved I am shedding tears, my IGG number is normal and the light chains are outstanding . God is good, we just don't understand his plan, nor can we see far enough into the future to comprehend it. I am just glad he has one for me. My life has been so busy with work and doctors that I am just worn out at the end of each day, but it is a good worn out. Just for giggles my onc. doc ask me if I was back to work yesterday, when I told him I went back on 2/19/13 he got a blank look on his face. The expression said it all although, how are you doing that!! I just looked at him and said busy hands are happy hands, when your happy and don't have time for continuous worry you can face all adversity with a smile not allowing it to ruin your day. My jobs do enough of that. FYI, I think I am close to full remission maybe already there, my God I love life, with out troubles and problems we do not become strong or grow, he blessed me so well yesterday that I think I grew to a new height in stature and faith, these things I must share as patients we have so many times that we are discouraged that we need to know that there is hope and a future for us. Please be strong and do not let the darkest times effect the brightest, the brightest are most bright after the darkest of storms if only we wait for him.. PS, never lost my eyebrows and my head looks like a chia-pet, the nurses all were rubbing it and picking yesterday, I don't know why but before the doc. apt . I was just in such good humor that I was picking and playing the whole time, guess it was Gods way of helping me help others.