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just looking for some positive

Wandi
Posts: 1
Joined: Feb 2012

hubby was told 1 month ago today he has mm. He has started Chemo (velcade, dex 2x weeks for 2 wks 1 wk off) He is also type 2 diabetic. The dex plays hell with his sugar levels for about 3 days.....he has no real side effects from velcade. He is exhausted all the time. He has had surgery to inject 'cement' into lower spine as mm severely compromised that...seems that his spirits are good..along with his eating. Having difficult time walking due to back pain. He is frustated that all he can do is lay down and Im having hard time telling him that is what his body is telling him to do. I have good days and feel so upbeat its kinda scary. I have other days where I could cry at the drop of a hat. Im hoping my emotions will come into line soon as it is hard to go to work on those 'bad' days and keep from being overwhelmed. Medical bills rolling in now.....and that only adds to my anxiety (Im the only one with income right now)trying to figure out how to make ends meet and not go crazy. I try deep breaths to calm myself and it works until mailman comes with more medical bills that have to get paid. On a side note, I am AMAZED at medical costs.......even with insurance.....holy moly.....I guess Im in wrong line of work....should have been a doctor!! lol Thanks for reading, just wanted to vent a bit!

taya
Posts: 2
Joined: Mar 2012

Hi Wandi,

Sounds like you are trying to cope the best you can. My mother has had MM for 24 years so it has been a long, difficult journey. The best advice I can give you is to remain focused in the present rather than thinking of what may come in the future.

There were so many points in these last 24 years that the doctors told us "this is it, this is the end" and told us to prepare for her to die. My mother would just look at me and say "nope, I want to live" and I would look at her and say "and I know you are going to" and we would carry on with that thought ONLY, focus on that thought ONLY, never gave any energy to the bad things that "could" happen or even that supposedly "would" happen.

That's the only way we have gotten through this.

Don't let your mind and thoughts bully you, because your mind will take you in negative and scary places if you let it. Stay focused, one task and one day at a time.

Take care,
Taya

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Thank you for this report.

Recently learned that my cousin has been diagnosed with MM. It is so great to hear news of a long term survivor of MM when mostly what you hear is doom and gloom (I am survivor of head/neck cancer and lung cancer, myself, so know a little about doom and gloom, but not to this extent).

I intend to send this message on to her, despite the obvious and necessary negative points expressed as well.

Hope and Humor!

Take care,

Joe

Detroitgirl
Posts: 10
Joined: May 2011

It was a roller coaster ride at first after my diagnosis of MM. Emotions calmed down after a while for me. I know what you mean about the medical bills.... Loved reading the post of a 24yr survivor. Hopeful. I achieved remission from my stem cell transplant. I wish the same for your husband.

Bonnie
Posts: 1
Joined: Aug 2012

Wandi - how is your husband? My husband has MM also and it is definintly a roller-coaster ride. He has had this for 2 years and had a stem cell transplant. So far he is in remission, but takes an oral chemo every day.
Try to stay positive, that is most important. Don't worry about those bills - they can't take what you don't have. We went to an attorny and put everything that we own into a trust so that they can't ever get anything. I applied for charity care at the hsopital where he receives treatment and got 100% approval - I'm not too ashamed to get his care - we just can't afford it otherwise. I pay the Dr. what I can when I can - they are usually pretty good about it. I at least pay my co-pays.
Keep thinking positive - it is a long and confusing road - but the more positive you are - the easier it will be!

jjranchguy
Posts: 9
Joined: Nov 2012

Hi, when I was first starting on Revlimid, my insurance company did not want me to take that drug. They wanted me to use the older version of the drug. The nurses at the cancer center were in the process of get help from the Celgene Corporation to help with the cost. you may want to check into that route.
Hope all goes well
Jerry

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