Things are changing in our MM support group. The nurse who usually ran it has been tossing the reins to me for some time now and just told me 2 days ago that she is moving to the lymphoma division of our cancer center. I did not see this coming. She has been a big part of our MM practice for years. I will have another nurse to help me out with the group and I’m glad. I kind of morphed into being a co-leader. It was not planned, not by me anyway. But, I like it and our little group has come to mean a lot to me, and some of the other “regulars”.  I have often said that, being among the youngish sect of MM families, this is the only time I am around people who are going through the same thing I am. Older folks may have other friends who have cancer or are facing loss. I do not. You certainly don’t wish this on anyone, but it’s alienating being the only one of anything. While I know it’s far different being a patient than a spouse, I come away from our group feeling uplifted and positive. Spending 90 minutes among such fantastic people like that recharges me. Things are very different when you make friends within those in the cancer community. Our priorities are so different from the norm. I have always gotten along well with people older than myself and that is one of the reasons. My own life-changing health issues, which severely affected what should have been the best years of my life, changed my priorities drastically. And, while some folks my age are worshipping money and keeping up with the Joneses, I couldn’t care less about that nonsense. I try to stay away from drama too. Something about living in a place of life or death sure makes many things seem that much more petty, donchaknow. None of that stuff matters when you live here in myeloma-land. In my case, I am trying to keep my husband here with us. I am worrying and praying hard for others I know who are struggling. I see young, vital people die way before their time, leaving devastated spouses and children behind. Everything in my life is colored by the fact that we are living in this scary, sad, fragile place.

Recently, we had some really frustrating things happen during my daughter’s softball season, under a coach that parents have been trying to get fired as soon as he started, 5 years ago. He is a bully, abusive, and an untalented coach to boot. I have complained about his treatment of the kids several times. Many others have too. His behavior has improved, but, not enough. He has anger management issues. I knew he would retaliate on our daughter due to our complaining and he did. She is one of the top players in our program and he sat her on the bench for most of the season. Now, some people may read that and think that I am biased about her skills, but, Liv went over 25 games without a single strikeout since last year with more at-bats than any other girl on her team. She was the best player on her freshman and JV teams, hands down. She still has only 3 strikeouts now in about 35 games played, one on a bad call. Other parents, who have seen her play for years, kept coming up to us and saying, “what is OLIVIA doing on the bench?” I’m not saying she is a star, but, we have a very weak program, and, she is a pretty good player and better than most of the others. As there is every year with this coach, there were a lot of unhappy parents. But, they would say to me, “there’s always next year.” I don’t respond with the thought that goes through my head because it’s this: I don’t know if there’s next year. Ya see, we were told 8 years ago my husband would not see her graduate high school, unless he took the risk to have an allo transplant and it worked. He passed on that option, then. Next year is not guaranteed to us, as a family. I sure pray all three of us will be here next season but we have no way to know if this was the last year the 3 of us would be here for a softball season. WE DON’T LIVE FOR NEXT YEAR !!! WE HAVE TO LIVE FOR TODAY !!!

I don’t like to play the “cancer card”, so, I don’t. But, one of the things I said to the coaches after something happened last year that had me furious, was that Olivia has been living with a tragedy since she was 8 years old, sports is supposed to be an escape from that grief, not an addition to it. I refuse to explain to them what that tragedy is. I don’t want to be seen as trying to use it(anymore than I just did) and it’s not their business. I was just SO angry that these coaches (it’s a husband and wife that run the program) ruined the love of this game for so many girls that they quit, or cry on the field, or watch their friends be humiliated and screamed at. It’s not right. Meanwhile, this head guy, who is so mean to these girls, claims to be a sensitive guy. He tears up at times and his wife is pregnant with their first kid so now he claims to be even more mushy. I can’t help but roll my eyes.

Liv told me that he did a softball clothes fundraiser and was giving the money to a family whose young daughter was dealing with a cancer relapse. Her brother goes to our high school and designed out softball logo. He had the family come to one of our home games, let the girl throw out the first pitch and hang out in the dugout. Luckily, we won the game. He came over to the bleachers and thanked us parents for standing and honoring this family. He said he’d had to keep his sunglasses on because he was having trouble holding it together. Well, I know there is good and bad to all people and he is no exception, but, the truth is also that you see people’s true colors under stress, and he shows that side of him far too much. He tries to win people back over after his tantrums and angry outbursts, but, neither the kids nor the parents can forget the nastiness and unfairness he shows to our girls. Tim and I sat there watching all this, while he was pouring on the charm, having just come from Tim’s oncologist’s office, having just found out his m-spike continues to climb, having just torn 2 band-aids and a hospital ID bracelet off his arms before anyone at the game saw them. I wanted so badly to go up and talk to this girl and her family. I probably know the doctors who treat her, but, going through what we’re going through is still not nearly as bad and unfair as what they’re going through.

But, I also felt like going up to that jerk of a coach and saying, you had no problem causing so much grief for our daughter and us and we’re dealing with cancer and life and death too, you idjit. Here you are acting like some sensitive, giving person(and don’t think he doesn’t advertise this good work like a billboard, made a speech about it at the varsity dinner the other night. I thought he was gonna dislocate his shoulder patting himself on the back so much) The thing is, despite my never telling him about Tim’s cancer, he probably knows. My daughter’s cheerleading coach knew and is good friends with his wife.

I think the thing that is so upsetting for me is this, and it’s something that I spoke about in my last post about everything being different for us. There is such an anger and deep-rooted disappointment when you know your daughter only got to 8 years old and then the wheels fell off her life. And, she has dealt with 2 bully teachers that made her hate school those years, several bully girls over the years, and now a bully coach. I cannot believe the teachers and coaches our school system considers acceptable. I just wish there was SOME TINY BIT of fairness in her life. SOMETHING to make her think that the good will outweigh the bad in her life. My kid is a smart kid and pretty athletic. Things come easy to her and as a result, she is not always driven or prone to trying hard. There is nothing, that I can think of, that she put more drive into than softball. Played since 1st grade. Put up with her parents coaching for 8 years, private pitching lessons since 3rd grade, batting lessons, you name it. The kid went 7 days a week all last season because of practices, games and private lessons on Sundays. And, this is what it got her. She asked me to step up and complain about her coaches last year because even though they weren’t yelling at her, it was heartbreaking to see/hear them humiliating her friends. I warned her they might take it out on her, she said, “I know” but she just couldn’t stand to see her friends upset. So, I did the right thing, for the kids, and now, my kid is marked and suffered for it. I cannot look at my life and use it as an example of fairness or good winning out over bad. That’s not how my life went, unfortunately. My daughter has inherited some things from me. I sure as heck wish she hadn’t inherited that part. It would have been nice for her to be rewarded for her talents. It would have been nice not to have her watch much less talented girls play while her self-esteem suffered, knowing it was personal then, that he limited her play time. (I kept telling her it was not her, it was me and the fact that we did the right thing) It just would have been nice to see fairness in her life. It’s never easy for any parent to see their child suffer in any way.  But, knowing your child lives in fear of losing her dad, every day of her life, jeez, you’d think she could cut a freakin’ break somewhere.

Once again, this post just took on a life of its own. But, this is another “day in the life” of a wife, mom, and myeloma caregiver.

*An update. Liv is a straight A math student and always has been. She scored so high on last year’s final, she “screwed up the curve” for the kids who did poorly and her teacher contacted her guidance counselor and recommended a higher level class for this year than she normally would have had. They changed her schedule last minute to do that. The teacher of that class……the softball coach’s wife, who also coaches softball. So, this spring, Liv’s grade dropped to a B. The woman is pregnant and all the kids know she has pretty much fallen down on the job this last half year and is not teaching them properly, but I had a suspicion it was more with Liv because we complained about her husband. Liv just got a project back. She went above and beyond on this project and was very proud of her work. I had spoken to her guidance counselor who also thought it odd that her grade dropped just as we were dealing with the softball stuff. Well, I just looked at the project all graded. She was given an 87, I have the grade paper the teacher used to grade it. Liv was marked off for several things that are not wrong. THIS WAS NO MISTAKE. The way I see it, even being a devil’s advocate, when I add up the points she was mismarked for, she got an A. Liv won’t let me confront the teacher or the math supervisor. She is afraid, again, that her husband will just take it out on her next softball season. This goes on her transcript for college. This affects her grade point average, and THIS is what I’m dealing with with these 2 people tag-teaming my kid. I am FURIOUS !!!!