My 53 year young husband was diagnosed with MM in the beginning of October, 2012. He’s doing we’ll with his chemo treatments (not to many horrible side effects, thus far)…about to end his fourth round of 3 week treatments (he’ll have 6 rounds in total). Two more rounds after next week. He’s scheduled for a stem cell transplant in April. My concerns are that my life is so very busy and I’m just worried about how I’m going to find the strength to do it all…and I certainly don’t want to share these concerns with him. (I work full time as an office manager in a very fast paced non-profit, my youngest daughter has company dance almost every night of the week, and I’ll need to keep my house extremely clean when he returns). I’m just feeling very overwhelmed because I’m often exhausted with the normal duties…and am afraid that I won’t be able to keep up with everything, for my husband’s sake. I don’t have the option of having family help. Please know that I’m not feeling sorry for myself, at all…I’m just looking for any advice that any of you may have to offer.
Hello Lisa,
You will need to get some help. My husband hired a young college girl in need of some work. She was wonderful and continued to come out after I got back from the hospital for several months.
I am thinking that we were given info on volunteers that were available to help out after getting back home. Contact social services for some help with contacts.
Your husband will be very tired for quite some time after SCP. He may need someone to check on him throughout the days when you are not able to be home. I do not have family help either. Lucky for us, Mike had lots of sick time and vacation accumulated that he was able to use to be with me more.
I wish you both the strength to get through it all. You will make it, but you have to take care of yourself too.
I was 55 yo when DX’d. It makes me feel better knowing there is another young one of us with MM. It is not very easy dealing with it. Praying for a cure.
Be strong and have faith.
Wishing you both the best.
KK
All I can say right now is THANKYOU… As tears overwhelm me. I’m not alone, after all. ***
This is great information and it gives me a direction to go in. Much appreciated!
Hello, Lisa
I am also the wife of a young mm patient. He was diagnosed at 48 years old last Feb. He has been on chemo ever since. In fact, he has chemo today. His numbers are still not low enough for stem cell transplant. I understand how you feel. It is tough. But remember, there are many of us out there in your shoes.
Wishing you the best,
momo2dogs
Hello,
I am a young patient with MM...! I was diagnosed days after my 48th birthday, 2011 and I have been in treatment ever since. At first diagnosis I had 10 compression fractures in my vertebrae and lost 3-inches in height. I had a year of different chemo regimens starting with Revlimed and ending with Valcade. As the patient, I have a very positive attitude and VOW to beat this ... I have too many goals yet to acheive and a family that I love far too much to leave just yet.! My wife is my rock! She works full time and is very busy with outside functions such as being involved with the United Way as well as the Womens' League just to name two. We have many friends and family members who follow my progress on Carepages.com which she keeps updated weekly. She claims that she draws strength from the process of updating everyone, as it also clears her mind and enables her to "accept" this life challenge and fight back. As for me, being the one who needs the help and attention at times, I am able to re-charge my attitude from her display of strength as well. I find that I gain strength because she is so busy and also has her own goals she wants to acheive. I want to fight harder and get better so that she can find time for her "self" as well.
I had the first of two stem cell transplants Dec. 18, 2012 and will have my second transplant March 4th, 2013. My Doctor at the Univ. of Iowa Hospitals, is the founder of this "Tandem Transplant" clinical regimen. Once I was transferred to be under his care, he diagnosed that if I did nothing and stayed with what I was doing, then I would have 6-mos to no more than 2-years and if I chose to do his "Tandem Transplant", I could have 10-years plus! I opted for the "PLUS"!
I don't want to preach, but I truly believe that positive thinking and strong attitude will considerably help in the progress as we all search and pray for a cure or remission. Fighting back harder than the Myeloma, is challenging ... to both the patient and care-giver. I also believe that the positive attitude has to start with the patient before the care-giver can add fuel to the fight. We need to Get Up not Give Up!
I hope you can find strength and positivity as your family fights and takes on this challenge that life has thrown at us. It is important that you find a path and time to re-charge your "self". Your husband must fight and be positive in attitude first so that you can find the time for everything. Your family will draw strength from your positivity and strong will as you juggle everything.
I pray for you and your family.
God bless.
Mike
"Regardless of what came before ot has yet to come, what matters most right now,
is how I choose to respond to the challenge before me.
Will I lie down or Will I fight ?
The choice is mine ... and I choose to Fight and Finish Strong!
anonymous
Wow, did I need to see this today! Thank you for sharing. I would like to comment but will have to do that later.
I will keep you and your family in my prayers.
Karla
Lisa,
My 56 year old mom was diagnosed the week before Christmas. I am trying to take it one day at a time as this diagnosis was something we never would have expected, nor anyone else for that matter. My husband and I are pulling our kids out of some of their actitvities so we have more time to help out my mom and reduce that overwhelmed feeling (we have a committed dancer too). I'm finding that even with my dad caring for my mom most of the time and my brother filling in, there are still so many needs to be filled such as cooking and cleaning...you need to care for your health too. If you're not plugged in a church, maybe you can check into some nearby as they can be a good source of support with meals, cleaning, lending an ear, etc to help lighten your load. Our faith is what is getting us through the day.
hi Lisa,, I don't know much about this because I am new to it, My brother was just diagnosed with MM, and I could imagine how overwhelmed you must be feeling. He has a wife, but as his sister, I know how hard it has been on his wife. My brother is also schedules for a transplant in april. I have a question for you, did your husband serve in Vietnam? My brother did, and there is a whole group of vets that feel the spraying of agent orange is what gave them MM. I know tis is going to be a tough road for you but just hold to the hope that it will be over soon and everything will go smoothly..thats what I am hoping for also. You can do it, it will be exhausting, but you are woman ! :) can you hear the roar ? .. Try to find a support group at your local hospital or online, that will help a lot :) talk soon
Roxana
Just want you to know that MM is one of the illnesses that the VA recognizes as being caused by agent orange. Get the the VA as quickly as you can and file a claim.
My husband was exposed to agent orange he got prostrate cancer. He is consided 20% disabled and recieves a disability check from the VA.
I on the other hand have never been in the sewrvice and have Mutliple Myeloma. It was a long road but finally in remission and going for a stem cell harvesting, so if I come out of remission I can have my own transplanted.
Good Luck
Hi Lisa, I am a 56 yr old mm patient who just completed a sct, sadly my doctor wanted to do tandem transplants but they could not get enough stem cells out of me for 2 procedures. I had hodgekins lympoma 15yrs ago and was treated with radiation, it makes it harder to get stem cells. So far I have not had any issues, I had the chemo on 1/21/13,recieved the stem cells on 1/22/13. Spent 2 weeks in the hospital and am returning to work on 2/18/13. I am on a heart pill for atrial flutter a result of the chemo, they feel this will resolve itself within weeks. I am not excedingly tired nor am I ill. I expect to tire easily once I start working again, however I don't feel tired. My blood counts have mostly returned to the normal range including the white cells. I am a building engineer for an 800,000 sqft building, so it is a high pressure fast paced environment with lots of responsability. Overall this has been much easier than I expected, I had tolorated velcade,revlimid and dexadron with few issues, just a little nuropathy in my feet, this has been allmost as easy. My bigest issue has been with my bowels, hard to keep them under control, I must keep imodium on hand. Does your husband have any other complications and will your insurance allow him to stay in the hospital for recovery, these are key items that effect his recovery, staying in the hospital is very boring but bordum is a good thing when all is considered. I met many mm patients at the hospital, most had kidney problems from mm, I don't and I consider myself lucky. I had no infections or fevers, no mouth sores and minimal sickness from the chemo. One of the key items I feel is not to have any mouth sores caused by chemo. Tell your hubby to eat lots of ice while the chemo is adminestered, start 1/2 hr before and continue for 1/2 hour after the chemo is done. EAT LOTS OF ICE UNTILL HE CAN'T FEEL HIS TOUNGE, I had 13 large cups. The cold impeads blood flow to your digestive track and reduces the occurance of issues from the chemo. We spent a week at Hope Lodge during the extraction process and an older gentleman stopped for a visit, he had a sct several years before and was leading a normal life, still working at 74 and loving it, he told me about the ice. So moral of the story is Keep your faith, pray daily for help and don't expect the worst, prepare for it just in case. Tell ur hubby to take a laptop and books and expect to be very bored. Pick at the nurses and doctors, show an equal concern for them as they do for you, try to enjoy the vacation and may you and yours be pleasantly surprised as I have been.
God Bless Rodney
Rodney,
This is going to delight my husband to read your response… Thank you!
So, which hospital did you receive your transplant in? I know you said that you stayed at hope lodge, but I’ve read that there are other hope lodges, so I can’t assume that you were in Boston…which is where we will be.
Do you mind if I ask why the doctor wanted I do a tandem transplant? I know some doctors recommend this, but I’m not sure why exactly.
I stayed at Penn State Milton Hershey Medical Center in Hershey Pa. I am not sure why he wanted to do a tandem, maybe just as a surer thing. I spoke to soon about having issues, I must be very careful about what I eat, some things just make me ill, apple pie???. Still these items are minor
My husband really liked your message. He had our 14 year old read it… In hopes that it would help her. Again… Thank you!
Thank You, please understand that it is not all easy, some parts are horifying. But it is something you can do and with the proper mind set it can be easy. Tell your hubby to prepare for no hair, remember in todays world bald men are considered hot, just hope the eyebrows stay...Have fun and enjoy life, it is a gift.
May God Bless and have a speedy recovery
y
You made both me and my husband laugh!
Just an FYI, I returned to work on 2/18/2013 and have been getting stronger with each day. I may be an exception to the rule as I was very active all through the treatment process. I have allways enjoyed working long hours: busy hands are happy hands.. I walked about 1.5 miles on Tuesday all flat with no hills, I was tired but not exhausted. I suspect that I will be back to normal by spring!!!! my word God has made life good. Ps my hair is stll dropping
I’m really happy to hear that you’re doing so well! My husband has continued to work out every day and swears its helping (even on the days that it’s hard to do so). Thanks for the update…please continue to let me know.
I went to Hershey for testing today, preparing for a doc visit next week. This visit will be a hard one as he will tell me if it worked??? I hate the suspense. Had a bone marrow biopsey today, has to be one of the most painfull tests ever invented. I place it about the same as a root canal with minimal novecain. Still sore and its 8 hrs later.On a positive note I keep getting stronger and am having few if any other issue's. Every one looks at me like there is something wrong as I should not be able to function so soon. I just keep going, honestly I do tire a little quicker than I would like. Got to start working out.
God Bless, I will keep you posted
Thanks so very much for the update…you are truly an inspiration! God bless!
Hi, just an update on my prognosis, I am feeling great, plenty of energy, some neuropathy caused by the malaphane I suspect. I had my first followup doctor visit today, sadly I have only achieved partial remission from the transplant. I still have a m protien level of .6 , I will be starting an aggressive maintenance program using velcade,revlimid and dexamethadone.Not as good as I was hoping for, but not as bad as it could be. So my world will continue to be under a dark cloud, however I refuse to allow it to rain on my parade!
God Bless
Rodney