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Friends and Family Affected by Myeloma

An Unexpected life line

#1

I was just thrown a life line from a friend. As most of you know I have been around here a while, which means I have been living with MM for a while. over 3 years now. It is being controlled and seems to be doing well, the numbers are still way down, however it is not in a stringent remission. I had many issue's with the side effects recently, that is part of the reason I am writing this at 1am, the other is I needed to. I try to help in any way I can however it is hard, sometimes the people just fade away, understandably as they are in treatment. When you own physical conditions effect what you do you let the illness win, each battle it wins makes the war shorter as a discouraged person does not fight as well. I had something happen to me today that came in a unique way. Lately I have felt like I have fallen into a whole and could not get out, with the side effects hitting, not feeling well and tired all the time I just had lost something . Well one of our fellow members needed advice and through me a rope to get some, what she did not realize is that by doing that she gave me the rope I needed to climb out of the whole I was in. God has given me his grace to be able to make it through this, I can help people and should, they need help just as I did. Maybe with his grace I can be more help here, then some of my own problems will not seem so large, they are just little mice trying to ruin all the cheese.

Thank You All

Rodney

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#2

Rodney, When I was asked to become a moderator here I was very honored. I joined this group because my boyfriend has kappa light chain MM. I wanted to educate myself by interacting with others on this journey. Over the past 5 months of being here, I've read many of your struggle's & triumph's and have been deeply touched by all of you. I don't know you personally but, I feel like we are family. We all encourage each other by sharing our experiences. All that said, just as you were thrown a life line, you may not realize that you've thrown my boyfriend & I one as well. We are not going to allow the illness to win! Thank you Rodney for being real and for sharing your wisdom . You are stronger than you know and I believe I speak for us all when I say, you are a very valuable member of our family! Never give up! Focus on the fight, not on the fright (as Robin Roberts says!). You are an awesome person Rodney!

God bless you!

Kim (JerseyGyrl)

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#3

You are both wonderful people, Kim and Rodney, and I am so glad you are here. Ben's Friends threw me a lifeline when my son was sick; that's why I volunteer here.

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#4

Thank you Madere. I am so glad to be here! It is rewarding beyond words. God bless you for being here and for the wonderful job you do. We are all in this together!

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#5

Rodney, it is been a while since you see me on here, I became a member of multiple myeloma 50 and under on Facebook and I’ve been helping people out there. Like you I’m a slow case with multiple myeloma after nine treatments two transplants and now my fifth aggressive maintenance I still have not reached complete remission. There is still plenty of hope left yet there are dark days, and it would be so nice for one day I would not be reminded of the disease I have. But that is the point I have multiple myeloma, multiple myeloma does not have me. When our days are dark we need to be kind to ourselves, it is okay to be upset about what is going on, we just need to do whatever we can to not live there. Having support and friends ,people that can relate and just kind people in our lives is such a part of this important journey of our healing. I still often think of you Rodney and I hope you’re doing as well as can be expected we are here for the long-haul buddy and know that my thoughts always with you. Your friend Cherie

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#6

It's good to hear from you, Cherie. We have missed you. If anyone on your Facebook group would like additional support, feel free to send them our way.

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#7

This is certainly one of the most rewarding things I have ever done. You all are a caring group of friends, real friends. I feel I have been blessed to be able to help others, the burdens we bear and the experiences we have are just items to prepare us to help ones who are in need. Thank You All, and go get um Cherie, do what you are good at, help them survive and live.

Rodney

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#8

What a great discussion. you folks are the best!

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#9

Hello Rodney.

You state that your numbers are good but not 100%. With our illness, we know that we are not curable, just treatable. You have gone through a lot and came out a winner. You are an inspiration to all of us. None of us know for how long the "better" times will last and therefore let's not feel down and try to enjoy each day. People who are or think that they are 100% healthy could be dead or paralyzed in a car accident and most of the people in the Ukrainian Air disaster were on a happy trip and died in mid air without prior notice. None of us know when we are destined to die. We can outlive many a very healthy person because God took them for whatever reason.

I have been very sick this spring with a terrible reaction to Revlimid. 5 weeks in Hospital and inpatient Rehab. I could not breathe normal, could not walk one step without chest pain. So weak afterwards that I had to use a walker and still have to sleep half the day as I do not feel stronger until late in the day. I now go biking to the YMCA around 8:00 PM several times a week. In the mornings I can barely move. The doctors at the Abrahms Cancer Center in Philadelphia stopped the Chemo as my numbers are not bad enough (not that good either) and will figure out what I will be getting in the next month or so. Valcade, + 2 others (given together) stopped doing the job. I may have to go on trial medicines. I have NOT had a stem cell transplant and will not get one either.

Somehow I am not depressed and try to live as if I was just getting older and not able to do the things that I did before. I drive where ever I have or want to go, visit my daughter outside Baltimore and just rest the hours I have to.

I even work most days, I have been a Realtor for 37 years and my clients do not know that I have cancer as it does not show in my appearance. Working and resolving clients problems makes me happy and we all must do as much as we can to get happiness in our lives. I cry enough on my weekly visits to my husband at the cemetery. I am just thankful that he died 2 weeks before I was diagnosed. With all his health problems he would have suffered doubly seeing me so sick and all my hospital stays would have been very hard on him.

There is a very well organized group of MM patients who meet once a month in Philadelphia at the Ralston House at 36 and Chestnut St. They have been organized since the 1990 ties. They have fund raisers and donated a lot of money for MM research already in all these years.

I just heard about them and I will join their next meeting. It will be good to actually see and hear other MM patients and exchange ideas with them. My own specialist will be speaking to the group at their September meeting. I have actually never met (face to face) another MM patient. People in the doctors waiting rooms do not have a shield to say which type of blood cancer they have.

Stay well and be as active as you can, enjoy your friends and family and do not let MM take over. There are many hours a day when I talk to a client or put together a real estate program for a client where I DO NOT even think about my MM. Same if I am with my grand children or my friends or my daughters and we talk about everything else. I feel "normal" at that time. I hope that you can do that also.

I am very worried about our overseas friend from the Isle of Jersey. I cannot think of a reason that if she could, she would not keep in touch. I think of her very often and always wonder and hope that she is OK. I know that you were concerned also. How could we find out I wonder??

I thank God every day for my life. I have never asked God: "why me?"

Take very good care.

Best wishes and greeting from a fellow Pennsylvanian

Liz

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#10

Liz, thank you so much, your words are so true and have touched my heart. I truly believe that honesty and wisdom comes from adversity and Lord knows that you have had your share. I needed to hear what you said just to remind myself how lucky I am...I worry constantly about our friend in jersey, I fear the worst as I think you do also. In weakness we find strength, you exhibit this and are proof of it, refined by fire as fine gold.

Thank you so much

your friend rodney

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#11

Hello Rodney.
A couple of years have passed without being in touch
Are you still checking in to Bens friends?
How are you? What are the latest treatments you are getting?
I’m now since January on Darzalex which is a monoclonal immune therapy combined with Velcade and Dex.
I’m mostly in bed until noon or later. I sleep a lot and am exhausted all the time.
Life changed drastically for me.
Have you any news from our Isle of Jersey friend?
Please respond if you are able
Best wishes and regards
Liz in Pa.

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