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Friends and Family Affected by Myeloma

The Challenges of Life Adjustments after Multiple Myeloma

#1

Hi All,
I am new to the group and glad to be here, as this cancer is so very isolating. I was diagnosed this winter with Multiple Myeloma which was discovered after a tumor in my sacrum destroyed my sacrum requiring extensive reconstruction. To add insult to injury, my Company, where I was an executive, laid me off on the same day as th surgery as they did not want to keep me on board through my recovery. And due to the ramifications of MM, my career is probably over anyway. In addition, I have lost the ability to engage into almost all my Hobbies. I was a concert level organist and pianist, and I doubt I can return to that level, and my organ days are probably over, as my leg coordination is gone. I was big into the dog sports and had just bought a puppy for that purpose before all this happened, but now I can not engage in any of those active sports. Half of my friends have been awesome support, half have withdrawn from me as if I am already dead. I suppose that is pretty common. My partner struggles with the emotional feelings I have and cannot discuss the MM with me, as he cannot bear the thought of losing me. So I have to internalize all my fears and concerns and reduce them down to hard facts like what information is needed in wills and living Directives, etc. My Emotional needs are just not getting met at all. Are any of you feeling the same way and how are you dealing with it?

Another quick question. Do any of you know how you got this? And did any of you work in the telecommunications industry?

Thanks,

Phoenix49

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#2

Hi - It has been some time since I’ve logged into the forum and am here actually due to my forced isolation from group activities this Memorial Day weekend due to immune system restrictions following my recent stem cell transplant (STC). I definitely feel you about the cancer being so isolating in general and I quickly learned who my true friends were. I now see the world in its true light amazed at how some people have left my life and old have returned. My second night while hospitalized with chemo, my boyfriend of three years answered the phone unbeknownst and I heard him cheat on me with another woman, then make future dinner and travel plans with her. My parents moved me out of his house while I was hospitalized for the 2 1/2 weeks. I learned he was shallow and self absorbed. Although what happens sounds sad, a weight has been lifted where I feel like I have rid of untrue relationships and strengthened true ones. A life-long childhood friend who has been at my and my family’s side always continues to be and things with us have re-kindled. Other old friends have made their way back into my life so supportive and I’m relieved now that I feel like I can see people for who they really are now that I’m chemo bald and lethargic from the STC. Although I feel useless and tired recovering from the transplant, I am also elated.



When first diagnosed, in April 2015, I had been seeing a therapist weekly during my lunch hours and it was a huge help. He told me not to identify myself as the sick version of myself but to re-invent myself meaning that although I have new limitations I may find pleasure in other things (not to look at what I can’t do but to find things I can). I have a lot of bone pain and will likely never be able to run anymore (had a 4-inch hole in my iliac crest) so now I do Pilates and stretching. There are inspiring stories of disabled veterans or elderly people on YouTube engaging in new activities that I enjoy watching for inspiration.



It’s also difficult for me not to wear my heart on my sleeve but I realized I was talking too much about my pain to others, and that they cannot cure my pain putting them in an awkward position…the cancer would dominate our every conversation. Still to this day, I struggle with it, but I try to use humor to express my body’s limits to others when they forget and ask me to do physical activities. I joke “my butt is broken so sorry I can’t, but maybe we can do xyz.” I’m only 43 and was extremely physically active and now feel trapped in a 90 year old body all of a sudden. MM changed my life and I still work to cope every day to find creative ways to still have fun.

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#3

Thank you for your response. Your story is so much like mine. I am 49. And MM has been misdiagnosed in me for five years or more. So, I wonder how long this has been really there.

I am glad you have managed the stem cell transplant. My team is aiming for that as well.

I have discovered who my friends are and are not. I would guess this is a common revelation for everyone on the site. It can be a shocker, as you discovered. And you are correct, keeping a sense of humor is integral, although challenging. I cannot tell you how many walker jokes I have come up with since I became tethered to that gawd-awful thing!

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#4

Hi Phoenix49,

I would like to offer you some encouragement. Yes, your life changes in many ways, but there will be a lot of good things to come out of this also. Try to keep a positive attitude about things and be thankful for every day. (Don't mean to sound preachy!)

When you are better and your doctor says it is ok, look into the Livestrong program at the YMCA. It is a 12 week exercise program that is offered free for cancer survivors. I am guessing that it may be quite awhile before you are able (if you are able) to do this. I had a SCT in 2014 and signed up for it a year later and it really made a difference in how I feel and move. You will not have much muscle mass left after the SCT. :) I have continued to work out twice a week and it really helps. I also met a lot of other cancer survivors who became good friends and good support. If you can't ever try this, (and I know some people can't), keeping your mind active will help you to start feeling like a human again. I wish I could give you better advice and be of more help.

It is my understanding that there is no known cause for MM. However, I have read that there were 4 new drugs approved by the FDA last year specifically for MM. I would also encourage you to look up the International Myeloma Foundation and the Multiple Myeloma Research Foundation online. There is very good information there.

I obviously don't know your religious beliefs if any, but hope that you won't mind if I pray for you.

Blessings,

Terri

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#5

Hey Phoenix. I can relate with my partner now Husband unable to even discuss what I’ve been through or the eventual return. I’m going on 4 years in remission and know it’s coming. I’ve been unable to work because of my spine and chronic pain.
Feel free to reach out. I’m happy to share and commiserate. I use humor and may make you laugh.
Christopher

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#6

Dear Phoenix

You absolutely need a positive attitude or you will be depressed about MM and that can be more debilitating than the disease.

None of us know what will happen a second from now, let alone the future, so we must keep only good thoughts because they do make life more bearable.

Of course it bothers me that our cancer is incurable, it is frightening to think of this but with all the new drugs it seems to be allow us hope.

I was diagnosed in 2012 and have been on different chemo drugs. Revlimid almost killed my kidneys and lungs and Kyprolis now is giving me heart problems. I have been on 2 times a week chemo for 3 weeks out of the month for this entire time and there is no end in site. The numbers are not bad but not good enough to stop the chemo.

Lucky for me I am not afraid and I have a very good attitude. I was diagnosed 3 weeks after my wonderful husband died, because of my extreme exhaustion. And immediately after the first chemo treatment I became so ill that I was 2 weeks in the hospital followed by 4 weeks in a nursing home rehab type situation. Quite a few hospitalizations since then for pneumonia and chemo allergies.

No transplant for me. I am not a candidate.

Take joy in whatever you can and also rest when you have to. I nap every single day to help the exhaustion. I am not embarassed about it. Walking makes me out of breath and that was not the case before Kyprolis. Still I take the drug because it seems to help with the numbers. Also 40 mg of Dekadron and a 3rd chemo drug I cannot remember at this moment. I had a port installed which I love because the weekly blood tests and chemo therapy do not hurt at all at insertion of the needle.

Best wishes and greetings

Liz in PA.

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