It’s about 2 years since my diagnosis in May, 2014. During this time, I have had induction, a transplant in October, 2014, and maintenance, first with low dose Rev (5 mgs, 21 day cycle, bi-monthly velcade sub q and 12 mgs. dex). Dropped the Rev in September, 2015, due to side effects, (muscle inflammation). Onc was not willing to admit it was the rev, but after I dropped it, I felt a lot better. I guess I had to do my own science experiment! Actually my onc. was content to take me off all maintenance and just watch and wait, since I was in sCR. Call me a glutton for punishment, but I felt that I needed to have some type of maintenance therapy, based upon my chromosomal abnormality at diagnosis — addition of chromosome 1, which is considered high risk by many MM specialists.
So far, so good. For me, the challenges are as much mental as physical. I still find myself wondering, why me? How did this happen to ME? (Even though I believe there is a genetic component since my Dad died of MM in 1969 at age 50.) I worry about my kids. What did I pass on to them?
There are days, however, when I walk into a store or restaurant, and someone smiles, or the colors in the room are suddenly beautiful, and I realize that life is good. It won’t last forever, and that’s true for everyone, but all of a sudden I am awash in the beauty of it all. And then there are other days……where I cry for no reason, (or rather, the same old reason), and I have a lot of difficulty concentrating on anything substantial other than my feelings at the moment.
I am lucky to have a supportive family and great friends. Sometimes I wonder how they put up with me. I was always a person who spoke up for herself, but now I tend not to mince words at all. I generally cut to the chase. That is actually a relief. No pretense. I think I am more “real” now than I have ever been, and you know, it’s pretty liberating. I also try to be more kind. Honest, but more compassionate. I now understand what it is like to be ill or infirm in some way that affects your ability to do everyday things. So, I hold the door, I carry a bag for an older or disabled person, or I offer someone a ride if they are having trouble walking. Little things, but in the past, to a certain extent people who couldn’t “keep up” were kind of invisible to me, (sad to say). I try to pay attention now. And I have also learned to treat people they way they treat me. Give them the benefit of the doubt initially, but once they show who they are, I respond accordingly. I have experienced some great acts of kindness from total strangers, and the exact opposite from people whom I thought were my friends. You live and learn. People can be surprising.
Today is a slow Sunday. It is rainy and humid here in NYC. Did a few things around the house this morning, but don’t feel terribly motivated to do much more. One problem I have is that I tend to spend money to try make myself feel better. I have to work on that. I am still working, but I am a commissioned based salesperson, so my earnings can be uneven, to say the least. I have a home based office, so I don’t REALLY need to go out everyday, however, I feel that it is better for my mental state if I do get out. I have to find activities other than shopping for my excursions. I always get into trouble as soon as I leave the house! Old problem, now a little worse because I feel “entitled” to treat myself. Have to develop other ways to treat myself. I used to be a big exerciser before MM. I have begun to exercise a few times, with varied success. I seem to injure myself much more easily than I used to, even though I try to be very careful. I have osteoperosis, but no broken bones and no tumors, (that I know of). A couple of small lytic lesions. I do have arthritis. I know that the drugs, (especially the dex), have weakened my muscles, and I am a 61 year old, small woman, so ability to develop muscle mass is probably limited. I am also just getting over the flu followed by asthmatic bronchitis, so I have been off exercise for about 6 weeks. I will begin again next week. I did always love to work out. Just cannot go at it the way I used to. Have to pace myself and listen to my body.
Daughter just got home from work. Amanda. I love her so. Michael, my son, too. Best two things I ever did!
ellensmyelomajourney 