Before I talk about Marlene, I suppose an update is in order. I have finally rid myself of the pseudomonas bacterial infection in my sphenoid sinus. It took 2 weeks of Levaquin but it's gone. Unfortunately, my cough appears to be from something else, as it did not go away with the curing of that infection. I start on some kind of steroid used in a neti-pot type thing this week. Oh well, hopefully we will get to the bottom of that problem and I can get some relief.
As the holidays approach this year, it's been tough for me to be excited about them. Both of our families are fractured up. It's a shame but I asked Tim if he ever thought there would be healing in his family and he said "no". I am not surprised. As he has said many times, his family will never change. No matter how many friends they lose, they just keep on doing what they've always done and that's not something we want to be around anymore. We've been kicked while we were already down way too many times by these people. Then, to top if off, our kid, who has a nice group of friends, is now dealing with her best friend shunning her. And, all because Liv, as I advised her, stayed neutral in a mess that was going on between others, in hopes that it would just blow over. Now, I guess her BFF is ticked that she refused to sever ties with a few girls who had done nothing to Liv, but were not happy with the BFF. Honestly, you can't win. Reminds me of my sisters-in-law. If I refused to take their side in the immature argument they'd been in with each other for years, I was no good to them. Crazy.
Then, yesterday, I saw a facebook comment about Marlene. She did her auto transplant with Tim back in 2007 and was only 45 then, 52 now. She died yesterday and I was just devastated. I went up to my bedroom and cried. Another courageous, beautiful, funny soul taken down in her prime from this damned disease. I told Tim. He actually walked in the back door right after I read it and I was so upset, he knew something was wrong. I said later, "I don't know if I should even tell you these things but feel it's patronizing if you ask if I've heard from Marlene and I tell you she died 3 months ago." He said, "no, you have to tell me." But, there were several reasons I was crying and thinking about how petrifying it must be for him to have these people dying around him, from the same disease he has, just breaks my heart more. I also feel bad because it's been years since we got together. There were 4 patients going through transplant at the same time and we became friends and stayed in touch for a while. Met for lunch once or twice even. But, Marlene moved a bit further away, Carol died a few years ago, Jim and his wife life in PA, and, well, you know how it goes. You always think there's time to get in touch or see each other again. I didn't even know she was failing. Her sons got married and she looked fantastic in the photos. I'm just so sad. Tim said, "the holidays get harder and harder as we get older." He's right. So much going on, everyone you talk to dealing with family rifts. He said he doesn't blame Liv for not wanting to grow up. He said maybe some people have pretty good lives but too many have health issues, family problems and are losing people they love. Gets harder and harder to pull yourself up by your bootstraps.
Last week, I spoke at a mid-day, Advent service at church. Our Pastor does this thing at our New Year's Eve service where he invites people to come up and share how God worked in their lives this past year. He extended it to our Wed. services during this pre-Christmas season. Well, a kind deed that a complete stranger had done for me right after Tim's diagnosis had just come full circle recently. I met the man for the first time in Oct. and was able to thank him, again, in person. Just a few weeks later I found out he'd buried his 21 year old son this past spring, after the poor kid being dx'ed with a heart condition as a toddler and having a heart transplant. Here was this man in so much pain himself but still reaching out to be kind to others. So, I wrote a little sermon about that, as well as a few things that happened in church too. It was a small congregation, but, almost all of them were crying after I finished my talk, they were so moved. Pastor was moved himself, and he asked me to give the sermon again at a Wednesday night service so more people could hear it. So, I did. I read it this past Wed. night. The reaction was powerful and I am very proud of myself. Something sort of amazing happened too. My Pastor's wife is a very closed-off person. She rarely comes to church and has no friends that I am aware of. I've only had one conversation with her. Tim did the wood floors in their house so he's spoken to her a few times. She is very much a loner. Pastor's whole family has been in crisis for several years due to their oldest daughter's battle with anorexia. This daughter is beautiful and talented but struggling badly. The last story I shared in my "sermon" was about the day Leah(their daughter) and Pastor performed Amazing Grace for me in church just a few days before I was having my cardiac ablation 2 1/2 years ago. I bawled like a baby, I was so overwhelmed with their kindness. Leah has a beautiful voice and I love it when she sings in church.
After this service ended Wed. when I gave the sermon, I stood up to get my sweater on and Pastor's wife, Ann, is walking straight down the center aisle to me with her eyes overflowing with tears. She stands in front of me, looks me in the eyes and says, "Thank you so much for recognizing that in my daughter and saying those nice things." She is overwhelmed and I thought, "this woman needs a hug." So I hug her, hoping it will be well-received. It was. She hugged me back and we stood there hugging for a long time, she kept thanking me for what I said. We released and spoke for a few moments but there was a crowd of people waiting to talk to me about my sermon, so she went over and sat with Tim, calming down and talking to him for a bit. It was a proud night for me. This was a "bucket list" item for me and I was glad it was so well-received. But, I have to admit, the most rewarding part for me was that hug with Pastor's wife, who is a very troubled woman. We shared some catharsis together. Though we are both going through something different, both of us have someone we love dealing with a terrible disease. She told me she is afraid she is going to lose her daughter. It broke my heart. I am afraid I'm going to lose my husband too, so I can relate a little bit. I hope that I can get to know her a bit better now. She needs a friend, and I am willing to be one, if she's open to it. So, as Pastor told me about my sermon, everyone is going through something. The people who heard it could relate in their own way to what's going on in my life. And I've learned these past few years, that reaching out to help others is a way to heal your own heart too. You can feel so helpless when a tragedy strikes your life. Helping others where and when you can is a way to combat that feeling and lifts you up just as much as the person you are helping.
So, I am going to try to make the best of things this holiday season and look forward to 2015. We finish decorating our tree today, go to a candlelight, choir service at church tonight, and tomorrow we are playing hooky and going in to NYC for the day to see the tree, windows, etc. Gotta just make the best of it. Probably no better way to honor those we love that we've lost than to appreciate being alive and grabbing joy when we can.
Happy holidays y'all. Hugs to you from me.
Sunday, December 14, 2014
Tuesday, November 18, 2014
Not outta the woods yet
Last Thursday, I went back to see my sinus surgeon in his office attached to Mt. Sinai. Well, apparently this follow-up was not the end of this whole sinus saga for me. Turns out, they cultured something called pseudomonas from the infection he took out of my sphenoid and it's a tricky little bug. The Augmentin he had me on was not the right one for this sucker (I was a bit dismayed that I spent 9 days on this strong antibiotic, when he could have put a call into me after the culture came back to switch it.) So, now I am on Levaquin for 2 weeks, and have to go back a week after that. If my post nasal drip cough is any barometer, methinks this one isn't working either, even though it's supposed to work for this bug. The Ceftin my local ENT put me on in August worked great, but as soon as I stopped, the cough/drip came back. I'm wondering if we can go back to that if this Levaquin doesn't work and because he removed all that thick stuff that was stuck in that sinus for so long, maybe it would work this time and kick it completely. (TMI alert) I will just have to stay close to bathrooms while on it. I hope I don't have to do a month on strong antibiotics. I did this surgery to avoid that and hence avoid risking C-dif. The doc scoped my sinuses again and drained them too. What a treat that was. OWEEE. He uses this rigid scope (read; long, thin, metal rod) and he's got that thing halfway through my head, it seems. They shoot this anesthetic up your nose first, it drips in your throat and tastes awful, and it still is an uncomfortable procedure. I just keep telling myself, "could be worse." I was so dizzy and spaced out from the procedure and the elevators, I almost fell over while waiting for a restroom downstairs. I will get to experience this lovely procedure again at my next visit. Joy, happy Joy.
MM news. Tim had his check-up 2 Fridays ago, the same week of my surgery. We met the new doctor that came to us from Mt. Sinai. Noa Byran, I think her name is. Nice. Young. Seems to know her stuff. Tim's m-spike went up more than the 1 or 2 hundredths that it has been going up. It went up .07 this time to bring him to .31. I asked her about MRIs. He has not had any bone studies in a few years and even though he did not present with a lot of bone damage with his MM, I don't want to take any chances that it's happening now, with his numbers rising, and we're missing it. He has back pain all the time from degenerative disc disease and his profession, so he might not notice bone pain creeping in. She agreed it was a good idea. Preferred a PET, but I would rather save that and not have him go through all that radiation and being shot up with the isotopes unless it was really necessary. It sucked to see a bigger jump. Not gonna lie. I'm wondering how much longer this respite from chemo is going to last. It doesn't look like much longer, but, still praying things go slow. I bought him curcumin. As always, he hasn't taken it. Got a collection of stuff like that. *sigh*
Family news: We saw the out-laws for the 1st time in 6 months the other night. They came to a home football game to see Liv cheer. SO strange. Have not seen them since my father-in-law made a scene at Liv's last softball game of the season and we both let him have it. It's really unbelievable how many events they have ruined for us over a span of many years, including our wedding. They are just miserable to be around and have no respect for anyone. I was glad to go 6 months, and longer would have been fine with me. Neither one of them have any control over their tempers and they're like loose cannons. My parents were at the game too, sitting with Tim and me. His parents wound up sitting 3 rows in front of us. There was no room on our bleacher when they got there and I made darn sure I had people on either side of me so there was no chance I'd wind up right next to them. I looked at the back of their heads, as they sat there alone, and thought, "you did this to yourself." I dunno, I can't even imagine going 6 months not seeing your own kid. And, he's sick besides. Whatever. My dad went down and talked to them during halftime. He went to high school with them. Tim didn't even go down to see them. He said a few words to them after the game, while I went over to talk to Liv, and they left. On my side of the family, I have not spoken to my older sister in several months. Have not seen her since she threw that tantrum in the middle of our kid's sweet 16 trip at the end of June. It occurs to me the amount of times she has said she was appalled at how Tim's family continually kicks us when we're down, and then..........Hmmm. She tore a page right outta their playbook. She found out about my surgery and told her husband she was going to write me a letter to try to patch things up. Apparently, she chickened out. I really didn't want the added drama while I was nearing my surgery date anyway. I just don't get people. I really don't. I have little patience anymore for adults who throw tantrums like children. The irony is not lost on me that she and her husband are my out-laws best friends now. They have the VT thing in common, as well as their selfish personalities. It is not that I WANT to hold grudges against people. I don't find anything fun about this, being angry, disappointed. But, how do you forget someone ruining something THAT important in your life? She knew what it meant to us. How do you ever trust that person again when they have shown themselves capable of doing something so darn rotten? My sister has always been selfish. It's a fact she'd have a hard time denying herself. But, this was just too much. Sadly, it changed the way I feel about her, and I believe Tim feels the same way. Sometimes I sit and think about the amount of people who have screwed me over in my life and I think, "maybe it's me" but, the truth is, though there were toxic people I had to take out of my life, I can't think of anyone who walked away from me. I'm not perfect by a long shot, but, I am a good friend, and sister, and daughter, and my in-laws have lost all their friends, and my sister lost her old friends too, due to her lack of interest in their lives. I guess a lot of people are just the "fair weather" variety and when the shit hits the fan, they don't want to be there for people. Sad, very sad. Our families are so fractured. My other sister had not been in contact with our whole family for several years now. Word has it, she and her long time boyfriend are getting married, and no one from her family will be there, not even her 2 kids. I just heard that my cousin and his wife are not speaking with my aunt, after a big blow-up, and she lives in an apartment they built on to their house! It's everywhere. It really is. It is so rare to see a family where everyone gets along and there are no rifts. But, as adults, I think people have to realize that you can't shoot off your mouth and say whatever you want. There are consequences and you just can't un-ring those bells. As the holidays approach, these fractures dictate where you go, who you see, etc. There are lots of families I know who won't all be together this year, and it's all because of people who were incapable of holding their tongues and said and did things that were just unforgettable. It really is such a shame and I find myself being so disgusted with it all lately. It boggles my mind just how selfish and lacking in compassion so many people can be. I can't even wrap my brain around what their thought processes are. Why would I want to?
MM news. Tim had his check-up 2 Fridays ago, the same week of my surgery. We met the new doctor that came to us from Mt. Sinai. Noa Byran, I think her name is. Nice. Young. Seems to know her stuff. Tim's m-spike went up more than the 1 or 2 hundredths that it has been going up. It went up .07 this time to bring him to .31. I asked her about MRIs. He has not had any bone studies in a few years and even though he did not present with a lot of bone damage with his MM, I don't want to take any chances that it's happening now, with his numbers rising, and we're missing it. He has back pain all the time from degenerative disc disease and his profession, so he might not notice bone pain creeping in. She agreed it was a good idea. Preferred a PET, but I would rather save that and not have him go through all that radiation and being shot up with the isotopes unless it was really necessary. It sucked to see a bigger jump. Not gonna lie. I'm wondering how much longer this respite from chemo is going to last. It doesn't look like much longer, but, still praying things go slow. I bought him curcumin. As always, he hasn't taken it. Got a collection of stuff like that. *sigh*
Family news: We saw the out-laws for the 1st time in 6 months the other night. They came to a home football game to see Liv cheer. SO strange. Have not seen them since my father-in-law made a scene at Liv's last softball game of the season and we both let him have it. It's really unbelievable how many events they have ruined for us over a span of many years, including our wedding. They are just miserable to be around and have no respect for anyone. I was glad to go 6 months, and longer would have been fine with me. Neither one of them have any control over their tempers and they're like loose cannons. My parents were at the game too, sitting with Tim and me. His parents wound up sitting 3 rows in front of us. There was no room on our bleacher when they got there and I made darn sure I had people on either side of me so there was no chance I'd wind up right next to them. I looked at the back of their heads, as they sat there alone, and thought, "you did this to yourself." I dunno, I can't even imagine going 6 months not seeing your own kid. And, he's sick besides. Whatever. My dad went down and talked to them during halftime. He went to high school with them. Tim didn't even go down to see them. He said a few words to them after the game, while I went over to talk to Liv, and they left. On my side of the family, I have not spoken to my older sister in several months. Have not seen her since she threw that tantrum in the middle of our kid's sweet 16 trip at the end of June. It occurs to me the amount of times she has said she was appalled at how Tim's family continually kicks us when we're down, and then..........Hmmm. She tore a page right outta their playbook. She found out about my surgery and told her husband she was going to write me a letter to try to patch things up. Apparently, she chickened out. I really didn't want the added drama while I was nearing my surgery date anyway. I just don't get people. I really don't. I have little patience anymore for adults who throw tantrums like children. The irony is not lost on me that she and her husband are my out-laws best friends now. They have the VT thing in common, as well as their selfish personalities. It is not that I WANT to hold grudges against people. I don't find anything fun about this, being angry, disappointed. But, how do you forget someone ruining something THAT important in your life? She knew what it meant to us. How do you ever trust that person again when they have shown themselves capable of doing something so darn rotten? My sister has always been selfish. It's a fact she'd have a hard time denying herself. But, this was just too much. Sadly, it changed the way I feel about her, and I believe Tim feels the same way. Sometimes I sit and think about the amount of people who have screwed me over in my life and I think, "maybe it's me" but, the truth is, though there were toxic people I had to take out of my life, I can't think of anyone who walked away from me. I'm not perfect by a long shot, but, I am a good friend, and sister, and daughter, and my in-laws have lost all their friends, and my sister lost her old friends too, due to her lack of interest in their lives. I guess a lot of people are just the "fair weather" variety and when the shit hits the fan, they don't want to be there for people. Sad, very sad. Our families are so fractured. My other sister had not been in contact with our whole family for several years now. Word has it, she and her long time boyfriend are getting married, and no one from her family will be there, not even her 2 kids. I just heard that my cousin and his wife are not speaking with my aunt, after a big blow-up, and she lives in an apartment they built on to their house! It's everywhere. It really is. It is so rare to see a family where everyone gets along and there are no rifts. But, as adults, I think people have to realize that you can't shoot off your mouth and say whatever you want. There are consequences and you just can't un-ring those bells. As the holidays approach, these fractures dictate where you go, who you see, etc. There are lots of families I know who won't all be together this year, and it's all because of people who were incapable of holding their tongues and said and did things that were just unforgettable. It really is such a shame and I find myself being so disgusted with it all lately. It boggles my mind just how selfish and lacking in compassion so many people can be. I can't even wrap my brain around what their thought processes are. Why would I want to?
Monday, November 3, 2014
Sphenoid sinus surgery.......CHECK
I'm home y'all. Surgery went well but was in recovery longer than planned. Walked into admissions at 10:45 this morning, got in the car for the ride home about 7 pm. Got home a little after 8. Surgery was only about an hour or so. My heart rate was a bit high afterward so I think that was the delay in recovery. I told them I puke up Percocet and codeine so the anesthesiologist said he planned to shoot my face up with painkiller after the surgery so that maybe I could get by on Tylenol post-op. It did not register to me that he probably meant lidocaine and so I did not warn him not to use the epinephrine type. This might have been the reason for the tachycardia. Me and eppy are not on good terms. Thanks for the good thoughts y'all. I am glad it's over and now just hoping I don't have any of the complications that can happen. It's a tough trek into Mt. Sinai, not horrible, but I've got hospitals all around me that would be easier to get to. A little afraid to eat right now, but, I guess I gotta put that toe in the water some time. I seem to have kept water and a ginger cookie down, so far.
Wednesday, October 22, 2014
Snout surgery
So, I have avoided having surgery until now. 49+ years. I have a date with a very nice looking doctor in Mt. Sinai hospital who is going to operate on a blocked, infected sphenoid sinus, which is close to my brain. Some backround: I have had a post-nasal drip cough for probably 20 years. It was almost constant until I started taking an asthma med (inhaled steroids) that it calmed down a little, but, it still is an every day thing. Temperature changes trigger it, dairy and other foods, perfume, hormones, etc. I am forever sucking on Halls drops to control it. Back in Jan. or Feb. of this year, I started noticing a click in my throat when I swallowed. I waited to see if it would go away, it didn't, and after we got through Liv's sweet 16, I went to my ear, nose, and throat doc. He scoped me (up the nose and down into the throat) and said he saw nothing but ordered a CT scan to be sure. The CT of my throat was fine but they caught this blocked, inflamed sinus on it. Doc put me on a strong antibiotic, which cleared my cough up beautifully, but irritated my IBS so badly, I could hardly leave the house for running to the bathroom. A follow-up CT showed some improvement, but the next step would be 6 weeks of this very strong antibiotic and steroids, with no guarantee it would work. Now, I have a wonky heartbeat and steroids could aggravate that AND, 6 weeks of diarrhea with a good chance of getting C-diff, was not something I wanted either. Bad enough if I got C-diff. It's very contagious and I could give it to Tim. So, My doc sent me into NYC to see a man who is supposed to be VERY good at what he does, which is guided surgery in this area. He was very nice, said he really thinks I need the surgery and said that if I have had symptoms this long, what's stuck in there is probably so thick, meds alone probably wouldn't clear it anyway and he plans to widen the passageway to the sinus to try to cure the problem once and for all. I am SCARED, folks. I do not tolerate meds well and this is general anesthesia. I already warned him that I puke from narcotics. He said his wife is the same way, and I will be medicated for that to try to avoid it. I think it's my wonky heartbeat and allergy to Demerol that scares me more. I have always felt a bit jinxed when it comes to medical stuff. Things never seem to go "textbook" for me. If something happens to me, I cannot even tell you what a pickle Tim and Olivia will be in. Our support system these days has shrunk considerably and I manage 2 houses, Tim's business, and all the paperwork that comes in and out of here, along with Liv's life, etc. Tim really doesn't even have a good understanding of his MM, as he never wanted to know and left it up to me to find out what we needed to know to make decisions. It's so hard to be a caregiver with health problems of my own. Tim tried to comfort me by saying that he would figure it out, but, I know that he would not be able to stay on top of running his business and do all the things I do. He would have to hire the business paperwork and management of our rental property out, at considerable expense. It's just too overwhelming to even think about. I was told that it's not good to leave this sinus infected, that it could drain intercranally, (sp?). I dunno, it's probably been this way 20 years. It's tough when you have a choice to make. This may never turn deadly, but, what if something happens during surgery. On the other hand, this problem has been a b**ch to live with and I believe may be a large part of the fatigue I have suffered for many years. Chronic sinusitis causes fatigue and many other things. Your body is constantly fighting an infection it can't get rid of. Today, I go to my cardiologist for a cardiac clearance for the surgery. On Nov. 3rd, the surgery is scheduled. I know as it nears I will get more nervous. I just want this done and behind me so badly. I'd like to put it off and not do it at all, but, another part of me also says, "Denise, do this while Tim is not in treatment and you're not dealing with his condition on top of it." He will also have his check-up that week. My surgery, Monday, his visit, Friday. Gonna be a tough week. He has been having night sweats lately, which makes me nervous that his MM is on the move and chemo may not be far off. That cliché about taking it one day at a time is so hard, near impossible really. I try to tell myself, "Denise, you are having SINUS SURGERY, that's all. No biggie." Well, I hope it works out that way. This doc is confident, does this plenty. But, I've only been put out for wisdom teeth and a colonoscopy. I'm a big old chicken. So, wish me luck, folks. This is a big one for me, made even harder that we have to haul in and out of NYC to have it done, but, I'm told this guys is aces, so, I'm not gonna trade skill and confidence for the convenience of getting it done locally, if there even was someone around here. I flat out told my ENT and this surgeon, "I have a husband with myeloma and a 16 year-old. We can't afford to have anything happen to me."
Friday, October 3, 2014
Marriage and cancer
Perfect together? I think not. Well, I am going to blog about this and try not to get too personal.
Tim and I started dating when he was 21 and I was 20. Babies. We've been together 29 years now, married over 19. The good thing about dating a long time is, you know what you've got. There are no, or few, surprises. Sometimes, I think people get married too quickly. They wind up divorced and saying, "I didn't even know this person." They find out all these things after the wedding and decide they can't deal with it. That didn't happen to us. That's not to say we don't have our problem spots, we do, it's just that they were out in the open before we said those vows. Somewhere in those first 9+ years, we both thought "eh, I guess I can live with this." Now, if you've followed my blog, you may have heard me say that NOBODY LISTENS TO ME. It is a common theme throughout my life. Now, indeed, it's everyone's choice whether they want to listen to me or not. My problem is, that when certain people don't listen to me, even after I warn them of the consequences their decisions/actions will have, I get to suffer the consequences right along with them when they don't listen and do whatever it is I warned them not to do. This, over time, can drive anyone crazy. It is a hard position to be in. Nobody is always right, and I'm no exception, but I am right a lot of the time, and have even caught my husband warning my daughter, "you better start listening to her, she's rarely wrong." Too bad she doesn't, and he should take his own advice, because I've got two of them here, folks. They both have to learn everything the hard way and I get to suffer right along with them, and be the one to pick up the pieces, though, whenever possible, I refuse to bail them out, unless, of course, it's really serious or just makes my own suffering worse if I don't jump in to help. They need to be held accountable. Unfortunately, this problem may even be why MM entered our lives. Now, mind you, I have NEVER blamed this on my husband,(if ever there was a time you DO NOT SAY I TOLD YA SO) and he does not read my blog, (he doesn't Facebook or e-mail or any of that) but, 28 years ago, when he started working for my childhood friend's dad, who owned a wood flooring business, I started warning him about protecting himself from the chemicals. Shortly after he started working there, the boss said to him, "here, read the labels on these cans(the stains and polyurethanes). I supply you with masks, gloves, and a respirator, what you do is your decision." Well, as Tim was taught by his father, only sissies worry about that stuff. When Tim told me about this conversation, I read the warnings on the cans, and that's when I began begging him to protect himself. I told him that this was occupational exposure and he could very well wind up with cancer or other serious health problems. He shrugged it off, said who knew how long he'd even work there, complained the respirator was hot and uncomfortable to wear, and that was that. In the 80's, bleaching and pickling floors was all the rage. Within a year, Tim was suffering from sinus problems and severe allergies, which he never had, even when he was a landscaper. An older guy who worked there died of cancer. I do not know what kind and wish I did know now. Tim could brush that off as the fact that he also smoked like a stack and had been in the business when even stronger chemicals were used. I continued to beg him to protect himself. He ignored me. Tim refuses to believe his chemical exposure has anything to do with his MM. He's aware that it is a possibility. An aside here: wood dust is also implicated in MM and he has spent years inhaling that too. I do not force the issue. What difference does it make? He obviously doesn't want to think he did this to himself and why would he. He just says that this was what was in store for him and would have happened anyway. I recently "met" a woman on one of the MM facebook sites who has 2 men in her family that have MM and both worked in the family business doing wood floor re-finishing. I didn't even tell Tim and never will. But, it is VERY hard for me, that his habit of not listening to me resulted in something THIS DAMN BAD. Ya see, his MM not only ruined his life, he took out me and our kid too. Obviously, it is he who is paying the highest price, but, it's so hard not to be just a little angry, after years of this pattern playing out over and over, and, mind you, he STILL doesn't listen to me. OY! this was not the direction I planned to go with this blog post, but, to get back around to where I was going, cancer is hard on a marriage. Recently, Tim and I had a pretty bad argument, well, it was really a discussion, but he did something that really hurt me. No matter how many times I say, "don't do that, it hurts my feelings" he doesn't listen. I find it very damaging to our relationship and he just thinks, "eh, what's the big deal? I'm just kidding around." The last 7 years have found me in funks that have really taken me out at the knees. Oh, I put on the game face for the sake of others, but, there's no doubt I deal with a constant level of depression as well as angst about the future. It's REALLY hard when your own husband is not understanding and makes you feel even worse. I've talked to him SO many times over the years about these certain things he does. I could scream, it's just so irritating that I'm still dealing with it. When we had this talk, I could tell he felt really bad. He apologized and admitted he really screwed up. Then, about a week later, he did something else to me that I've told him a million times to STOP doing. I give up, I really do. For the most part, I consider our marriage a good one. We are friends, still enjoy each other's company. I have a lot of marriages I can compare it to and I would not switch with any of them. But, I sure wish I could make him understand that people have breaking points, where there is no going back. It's hard to argue and be mad at him. There is SO much guilt involved afterward. He has cancer for Heaven's sake. But, cancer or not, this is still a marriage, and one that is being put to a test that many are not put to. We have many other things that stress our lives too. His family situation has been a BIG stressor. The list goes on. I just wish that my own home was a place I could get away from that kind of thing. I wish that he would see that these are the memories we're forming. I was taken for granted before Tim had cancer. Now, I have devoted my life to him even more, and am taken for granted to a degree most people never experience. I'm not looking for a pat on the back for all I do, I just want some respect, decency, consideration. I'm not asking him to DO anything special, just NOT DO these things that really wound me and damage our relationship. I dunno, I can't wrap my brain around it when you tell someone something so many times and it does nothing. What part don't they understand? I'm sorry doesn't cut it when you do something over and over again. Marriage ain't easy, for any couple. It's work. But, when cancer enters the picture, really, all bets are off. It's a pressure-cooker. For me, I think, "our time is SO precious together, I want to make the most of it." A few years ago, I saw a therapist for a short time, as I've mentioned here before. I went for grief counseling really, and got some advice about Tim's family. She said something that haunts me to this day. She warned me to be careful about fighting and arguing. She said that the guilt you may face some day over it won't be worth it. Well, I'm sure she has seen many people struggling severely with guilt if she's done her share of grief counseling. And I certainly am afraid of living a life destroyed by guilt some day. But, cancer or no cancer, this is still a marriage, and it's still hard, and he still pisses me off.
Sheesh, that old phrase "nobody said it was gonna be easy" is true. But for crying out loud, why does it have to be THIS HARD?!!!
I feel like I have to add this little quote from Moonstruck, since I could not find a movie clip of the scene. Truth is, I still love that boy to the moon and back.
Rose: Do you love him, Loretta? Loretta: Ma, I love him awful. Rose: Oh, God, that's too bad.
Tim and I started dating when he was 21 and I was 20. Babies. We've been together 29 years now, married over 19. The good thing about dating a long time is, you know what you've got. There are no, or few, surprises. Sometimes, I think people get married too quickly. They wind up divorced and saying, "I didn't even know this person." They find out all these things after the wedding and decide they can't deal with it. That didn't happen to us. That's not to say we don't have our problem spots, we do, it's just that they were out in the open before we said those vows. Somewhere in those first 9+ years, we both thought "eh, I guess I can live with this." Now, if you've followed my blog, you may have heard me say that NOBODY LISTENS TO ME. It is a common theme throughout my life. Now, indeed, it's everyone's choice whether they want to listen to me or not. My problem is, that when certain people don't listen to me, even after I warn them of the consequences their decisions/actions will have, I get to suffer the consequences right along with them when they don't listen and do whatever it is I warned them not to do. This, over time, can drive anyone crazy. It is a hard position to be in. Nobody is always right, and I'm no exception, but I am right a lot of the time, and have even caught my husband warning my daughter, "you better start listening to her, she's rarely wrong." Too bad she doesn't, and he should take his own advice, because I've got two of them here, folks. They both have to learn everything the hard way and I get to suffer right along with them, and be the one to pick up the pieces, though, whenever possible, I refuse to bail them out, unless, of course, it's really serious or just makes my own suffering worse if I don't jump in to help. They need to be held accountable. Unfortunately, this problem may even be why MM entered our lives. Now, mind you, I have NEVER blamed this on my husband,(if ever there was a time you DO NOT SAY I TOLD YA SO) and he does not read my blog, (he doesn't Facebook or e-mail or any of that) but, 28 years ago, when he started working for my childhood friend's dad, who owned a wood flooring business, I started warning him about protecting himself from the chemicals. Shortly after he started working there, the boss said to him, "here, read the labels on these cans(the stains and polyurethanes). I supply you with masks, gloves, and a respirator, what you do is your decision." Well, as Tim was taught by his father, only sissies worry about that stuff. When Tim told me about this conversation, I read the warnings on the cans, and that's when I began begging him to protect himself. I told him that this was occupational exposure and he could very well wind up with cancer or other serious health problems. He shrugged it off, said who knew how long he'd even work there, complained the respirator was hot and uncomfortable to wear, and that was that. In the 80's, bleaching and pickling floors was all the rage. Within a year, Tim was suffering from sinus problems and severe allergies, which he never had, even when he was a landscaper. An older guy who worked there died of cancer. I do not know what kind and wish I did know now. Tim could brush that off as the fact that he also smoked like a stack and had been in the business when even stronger chemicals were used. I continued to beg him to protect himself. He ignored me. Tim refuses to believe his chemical exposure has anything to do with his MM. He's aware that it is a possibility. An aside here: wood dust is also implicated in MM and he has spent years inhaling that too. I do not force the issue. What difference does it make? He obviously doesn't want to think he did this to himself and why would he. He just says that this was what was in store for him and would have happened anyway. I recently "met" a woman on one of the MM facebook sites who has 2 men in her family that have MM and both worked in the family business doing wood floor re-finishing. I didn't even tell Tim and never will. But, it is VERY hard for me, that his habit of not listening to me resulted in something THIS DAMN BAD. Ya see, his MM not only ruined his life, he took out me and our kid too. Obviously, it is he who is paying the highest price, but, it's so hard not to be just a little angry, after years of this pattern playing out over and over, and, mind you, he STILL doesn't listen to me. OY! this was not the direction I planned to go with this blog post, but, to get back around to where I was going, cancer is hard on a marriage. Recently, Tim and I had a pretty bad argument, well, it was really a discussion, but he did something that really hurt me. No matter how many times I say, "don't do that, it hurts my feelings" he doesn't listen. I find it very damaging to our relationship and he just thinks, "eh, what's the big deal? I'm just kidding around." The last 7 years have found me in funks that have really taken me out at the knees. Oh, I put on the game face for the sake of others, but, there's no doubt I deal with a constant level of depression as well as angst about the future. It's REALLY hard when your own husband is not understanding and makes you feel even worse. I've talked to him SO many times over the years about these certain things he does. I could scream, it's just so irritating that I'm still dealing with it. When we had this talk, I could tell he felt really bad. He apologized and admitted he really screwed up. Then, about a week later, he did something else to me that I've told him a million times to STOP doing. I give up, I really do. For the most part, I consider our marriage a good one. We are friends, still enjoy each other's company. I have a lot of marriages I can compare it to and I would not switch with any of them. But, I sure wish I could make him understand that people have breaking points, where there is no going back. It's hard to argue and be mad at him. There is SO much guilt involved afterward. He has cancer for Heaven's sake. But, cancer or not, this is still a marriage, and one that is being put to a test that many are not put to. We have many other things that stress our lives too. His family situation has been a BIG stressor. The list goes on. I just wish that my own home was a place I could get away from that kind of thing. I wish that he would see that these are the memories we're forming. I was taken for granted before Tim had cancer. Now, I have devoted my life to him even more, and am taken for granted to a degree most people never experience. I'm not looking for a pat on the back for all I do, I just want some respect, decency, consideration. I'm not asking him to DO anything special, just NOT DO these things that really wound me and damage our relationship. I dunno, I can't wrap my brain around it when you tell someone something so many times and it does nothing. What part don't they understand? I'm sorry doesn't cut it when you do something over and over again. Marriage ain't easy, for any couple. It's work. But, when cancer enters the picture, really, all bets are off. It's a pressure-cooker. For me, I think, "our time is SO precious together, I want to make the most of it." A few years ago, I saw a therapist for a short time, as I've mentioned here before. I went for grief counseling really, and got some advice about Tim's family. She said something that haunts me to this day. She warned me to be careful about fighting and arguing. She said that the guilt you may face some day over it won't be worth it. Well, I'm sure she has seen many people struggling severely with guilt if she's done her share of grief counseling. And I certainly am afraid of living a life destroyed by guilt some day. But, cancer or no cancer, this is still a marriage, and it's still hard, and he still pisses me off.
Sheesh, that old phrase "nobody said it was gonna be easy" is true. But for crying out loud, why does it have to be THIS HARD?!!!
I feel like I have to add this little quote from Moonstruck, since I could not find a movie clip of the scene. Truth is, I still love that boy to the moon and back.
Friday, September 19, 2014
Sept. 18th support group with David Siegel, MD as speaker
I just want to say first that I am writing the words and opinions of someone else. Many doctors in the MM field, probably all medical fields, have differing opinions and their own preferred treatment advice based on their research and what they've seen in their practices and patients. I hope that some of this information is helpful and hopeful to people. Dr. Siegel has been treating MM since the 1980's. He became my husband's doctor in March of 2007. We love the big lug. That's not to say that I always agree with him, but I have seen, first hand, how brilliant he is and how much he cares about his patients. Plus, he's pretty damn funny.
He started off the meeting saying he knows that the question he always gets is "what's new and on the horizon for treating MM?" So, he went into that. He talked about Pomalidomide being the most recently FDA approved drug. For those who don't know, this is a close cousin to Revlimid and in the IMID group of drugs. He then mentioned Panabinostat (Farydak), which is due to be approved soon and is a HDAC inhibitor like vorinostat(Zolinza). He then spent some time talking about the monoclonal antibody drugs and T-cell therapy. Elotuzamab is the 1st monoclonal antibody drug. He said they are made by injecting mice with MM cells and taking their spleens out to harvest the antibodies they made. These antibodies are then spliced and altered to include a human component so they work on humans and then given to the MM patient. He also said that there is a scientist at U Penn, Carl Jung, that is attaching a patient's own collected T-cells to a monoclonal antibody to try to kill off the MM cells. It was really interesting stuff. He said the hardest thing about developing a monoclonal antibody for MM is trying to find a target on the cells that all MM'ers have. They haven't found one yet. Some people express CD38 or CD19 but not everyone. Also, it has to be a target/protein that the cell needs. If it is one that it doesn't really need, it can shut down production of it and therefore that monoclonal antibody drug will not work. It also has to be a target that is safe to go after. There is a cancer testis antigen that is present in the cells of 50% of MM'er's. Problem is, it is also found in the heart so you would damage the heart by targeting that antigen. He told us that 10 or so years from now, the treatment of MM will be totally different than it is now.
Someone asked if auto transplant is still all that necessary. As some of you know, our MM doctors send everyone who passes the pre-tests to auto transplant, unless they refuse. I don't know if they have an age cut-off, but if they do, it's up there. Dr. S said that a MAJOR MM center/hospital, which I hesitate to name, was all about trying to prove that autos were not as necessary now with the novel drugs we have for MM today. He said that very recently, after their own study turned out to prove them wrong, they are going back on that. He said the science shows that overall survival is better in patients who auto transplant up front instead of later or not at all. He said it is the cheapest, most effective and proven way to go and he pointed to a woman sitting right behind me that has been in remission for 20 years from one auto. He stated that in a very small amount of cases, auto seems to cure patients. (she may very well be one of them). Others get long remissions and stable disease and you're not in that "lottery" if you don't do it. We also talked about maintenance. Now, this may get controversial, so I am going to remind you, "don't shoot the messenger." As long as I've known Doc S, he has been about quality of life. He wants his patients to take that trip to wherever and live as great a life as they can. He tries very hard to let them do the things they want to do. This is another thing Tim and I witnessed first hand when Tim was on chemo. Doc. S does not believe in maintenance after auto transplant. That said, his co-worker, David Vesole does. He used to put everyone on low dose Rev. after transplant. Last he spoke at our group, he now bases it on risk factors and such so it's not everyone anymore. Siegel rarely or never uses it. I am not going to use quotations here although most of what I am saying is exactly his words, but he told us that he sees no definitive evidence that it improves overall survival. And, although it may extend the TTP (time to progression) a little, he feels the side effect profiles don't warrant it. These are toxic drugs with lots of side effects, including risk of other cancers, and people can feel like crud on them. He went so far as to say, when I mentioned that there is thinking that that drug is "used up" for you when you relapse that he thinks that some of those patients don't respond well to other drugs too when they relapse. Yikes, scary words. Other doctors have tried, I'm sure, but no one has convinced him that maintenance after auto is worth it. Now, that's when people are in remission or have stable disease. If the auto didn't work well, that's not maintenance if you are put on chemo, that's treatment. He ended that conversation with saying that when he TREATS someone with Revlimid, and it's working, he keeps them on it. He just doesn't automatically put people, who are in remission or a type of dormant state, (my words), on chemo.
He mentioned that he thinks Dex is the most dangerous MM drug. This shocked me and I wanted to ask why, but didn't get the chance. I'm thinking it's probably largely due to how much it weakens the immune system, making patients so at risk for illness and infection, but, Dex has tons of side effects so I don't know what his reasoning is, or if that is his reasoning. Lots of downsides. That being said, he said it is also a VERY important drug that makes almost all of the MM drugs work better. He cited a study where Pomalidomide was given to patients who were not responding to Rev or Velcade. There was an 8% response rate with that arm and a 28% response rate when Dex was added. You can't argue with 3 and 1/2 times the response rate. ( maybe the danger he talks about is due to domestic violence, that Dex being evil stuff for some)
A recently diagnosed woman asked a question about being diagnosed at stage 3. Doc. S said that the Durie Salmon staging system can show how sick a person is at dx, but it matters nothing to him about anything else, including overall survival. The ISS system has a few more markers that make it a bit more relevant , but the thing that affects survival the most is how a person responds to treatment. He said that even a lot of the chromosomal errors are shown not to be as important as they once were thought to be. Velcade levels the playing field for many of them. He did mention that the 17 P deletion was a tricky one though.
Someone asked about what kind of diet she should have her husband on. He remarked that he has found no diet that works on MM DOCTORS( I did say he was a big lug). He does not get too into diet or alternative stuff, but said that, of course, the healthier and fitter you are, the better off you are. You should eat healthy so you don't get diabetes and coronary artery disease, etc. because it will always be harder to treat someone who has other health issues to contend with. They will have a higher incidence of many of the side effects and risks of treatment.
As I wrote on the "Age 50 and under" MM Facebook site, he talked about pregnancy and MM. He said when a person is smoldering or stable/in remission, it is because their own immune system has not given up the fight against MM and is keeping it under control. A woman's body goes into a deep state of immune suppression when she gets pregnant so her body does not reject the fetus. He has seen 2 women with smoldering MM whose MM "exploded" (his word) when they got pregnant. A very scary thought indeed. Several women commented on that FB post that they were diagnosed while pregnant or soon after having a child.
He talked about the measles vaccine that has been in the MM news lately. He said the woman that it worked for now has a recurrence of the plasmacytoma on her skull. I had not heard that and secretly hope he was not talking about the woman I'd read about who seems to have been cured with it, but it sure sounded like the same case and I concede he is much more "in the know" about MM than I am. He explained that measles, as well as the coxsackie virus, are "sucked up" by MM cells. Giving a mega dose of that virus can make the cells so sick when they suck so much of it up, that they die. He said this is a promising direction of MM treatment and hopefully can be made to work even better. (BTW, we did not talk about this part yesterday, but I have read that you don't want measles antibodies floating around in your body if this is to work. If you have an auto, you may want to bow out of being revaccinated for measles.)
We talked about allos. We had a few people there who'd had them. I asked if our transplant center was doing them with related haplo-matches. This is when you don't have a perfect sibling match. A parent, sibling, or a child can be a half match and they do things to make it less dangerous, in terms of GVHD. He said that a 10/10 unrelated donor would be chosen before a haplo, but, that a related haplo was about as safe as a 9/10 unrelated donor. He said that HUMC is doing more haplos for MM patients than any other center. WOOT WOOT. I liked hearing that.
An aside here: it pays to stay on good terms with your family. That ship has sailed/sunk with Tim's family, but I'm sure they'd pony up a few cells if needed. His sister is a full match, but, starting to collect health issues herself. OY!
So, what else? It was SUCH a great meeting and I took notes because I thought it was such good and current information, I wanted to share with y'all.
Oh, someone mentioned a rash from Rev and said she was allergic. He corrected her. He said that all the IMIDS cause rashes in many people. It is not a true allergy reaction. It is possible to be allergic to them, but, these "functional rashes" are not always indicative of an allergy and sometimes the drug can be continued at a lower does or a different one, like Pomalidomide, can be tried.
Towards the end of the meeting, one gentleman asked him when he thought MM would be considered a "chronic disease." He said, it already is a chronic disease for some people. Look how long some of you have had this. You can live for 20 years and more. He said that for some people, it is a curable disease, and unfortunately, for others it is still a fatal disease.
I think that's it folks. If I remember anything else that seems important, I will add it here, but I think that's all the important stuff.
Again, please understand, where opinions have been repeated here, "your mileage may vary". Many times, this is not a case of what's right or wrong, it's just different. Statistics and studies tell a lot of the story, but every doctor has seen different things happen with his patients and that goes a long way towards forming their opinions on what the best treatment options are. Doctor Siegel mentioned that same type of thing when he was talking about chromosomal issues. There are ALWAYS exceptions. A "high risk" person can respond to chemo very well. You just never know. MM is not one disease, as he says quite often now.
TGIF y'all. Have a great weekend!
He started off the meeting saying he knows that the question he always gets is "what's new and on the horizon for treating MM?" So, he went into that. He talked about Pomalidomide being the most recently FDA approved drug. For those who don't know, this is a close cousin to Revlimid and in the IMID group of drugs. He then mentioned Panabinostat (Farydak), which is due to be approved soon and is a HDAC inhibitor like vorinostat(Zolinza). He then spent some time talking about the monoclonal antibody drugs and T-cell therapy. Elotuzamab is the 1st monoclonal antibody drug. He said they are made by injecting mice with MM cells and taking their spleens out to harvest the antibodies they made. These antibodies are then spliced and altered to include a human component so they work on humans and then given to the MM patient. He also said that there is a scientist at U Penn, Carl Jung, that is attaching a patient's own collected T-cells to a monoclonal antibody to try to kill off the MM cells. It was really interesting stuff. He said the hardest thing about developing a monoclonal antibody for MM is trying to find a target on the cells that all MM'ers have. They haven't found one yet. Some people express CD38 or CD19 but not everyone. Also, it has to be a target/protein that the cell needs. If it is one that it doesn't really need, it can shut down production of it and therefore that monoclonal antibody drug will not work. It also has to be a target that is safe to go after. There is a cancer testis antigen that is present in the cells of 50% of MM'er's. Problem is, it is also found in the heart so you would damage the heart by targeting that antigen. He told us that 10 or so years from now, the treatment of MM will be totally different than it is now.
Someone asked if auto transplant is still all that necessary. As some of you know, our MM doctors send everyone who passes the pre-tests to auto transplant, unless they refuse. I don't know if they have an age cut-off, but if they do, it's up there. Dr. S said that a MAJOR MM center/hospital, which I hesitate to name, was all about trying to prove that autos were not as necessary now with the novel drugs we have for MM today. He said that very recently, after their own study turned out to prove them wrong, they are going back on that. He said the science shows that overall survival is better in patients who auto transplant up front instead of later or not at all. He said it is the cheapest, most effective and proven way to go and he pointed to a woman sitting right behind me that has been in remission for 20 years from one auto. He stated that in a very small amount of cases, auto seems to cure patients. (she may very well be one of them). Others get long remissions and stable disease and you're not in that "lottery" if you don't do it. We also talked about maintenance. Now, this may get controversial, so I am going to remind you, "don't shoot the messenger." As long as I've known Doc S, he has been about quality of life. He wants his patients to take that trip to wherever and live as great a life as they can. He tries very hard to let them do the things they want to do. This is another thing Tim and I witnessed first hand when Tim was on chemo. Doc. S does not believe in maintenance after auto transplant. That said, his co-worker, David Vesole does. He used to put everyone on low dose Rev. after transplant. Last he spoke at our group, he now bases it on risk factors and such so it's not everyone anymore. Siegel rarely or never uses it. I am not going to use quotations here although most of what I am saying is exactly his words, but he told us that he sees no definitive evidence that it improves overall survival. And, although it may extend the TTP (time to progression) a little, he feels the side effect profiles don't warrant it. These are toxic drugs with lots of side effects, including risk of other cancers, and people can feel like crud on them. He went so far as to say, when I mentioned that there is thinking that that drug is "used up" for you when you relapse that he thinks that some of those patients don't respond well to other drugs too when they relapse. Yikes, scary words. Other doctors have tried, I'm sure, but no one has convinced him that maintenance after auto is worth it. Now, that's when people are in remission or have stable disease. If the auto didn't work well, that's not maintenance if you are put on chemo, that's treatment. He ended that conversation with saying that when he TREATS someone with Revlimid, and it's working, he keeps them on it. He just doesn't automatically put people, who are in remission or a type of dormant state, (my words), on chemo.
He mentioned that he thinks Dex is the most dangerous MM drug. This shocked me and I wanted to ask why, but didn't get the chance. I'm thinking it's probably largely due to how much it weakens the immune system, making patients so at risk for illness and infection, but, Dex has tons of side effects so I don't know what his reasoning is, or if that is his reasoning. Lots of downsides. That being said, he said it is also a VERY important drug that makes almost all of the MM drugs work better. He cited a study where Pomalidomide was given to patients who were not responding to Rev or Velcade. There was an 8% response rate with that arm and a 28% response rate when Dex was added. You can't argue with 3 and 1/2 times the response rate. ( maybe the danger he talks about is due to domestic violence, that Dex being evil stuff for some)
A recently diagnosed woman asked a question about being diagnosed at stage 3. Doc. S said that the Durie Salmon staging system can show how sick a person is at dx, but it matters nothing to him about anything else, including overall survival. The ISS system has a few more markers that make it a bit more relevant , but the thing that affects survival the most is how a person responds to treatment. He said that even a lot of the chromosomal errors are shown not to be as important as they once were thought to be. Velcade levels the playing field for many of them. He did mention that the 17 P deletion was a tricky one though.
Someone asked about what kind of diet she should have her husband on. He remarked that he has found no diet that works on MM DOCTORS( I did say he was a big lug). He does not get too into diet or alternative stuff, but said that, of course, the healthier and fitter you are, the better off you are. You should eat healthy so you don't get diabetes and coronary artery disease, etc. because it will always be harder to treat someone who has other health issues to contend with. They will have a higher incidence of many of the side effects and risks of treatment.
As I wrote on the "Age 50 and under" MM Facebook site, he talked about pregnancy and MM. He said when a person is smoldering or stable/in remission, it is because their own immune system has not given up the fight against MM and is keeping it under control. A woman's body goes into a deep state of immune suppression when she gets pregnant so her body does not reject the fetus. He has seen 2 women with smoldering MM whose MM "exploded" (his word) when they got pregnant. A very scary thought indeed. Several women commented on that FB post that they were diagnosed while pregnant or soon after having a child.
He talked about the measles vaccine that has been in the MM news lately. He said the woman that it worked for now has a recurrence of the plasmacytoma on her skull. I had not heard that and secretly hope he was not talking about the woman I'd read about who seems to have been cured with it, but it sure sounded like the same case and I concede he is much more "in the know" about MM than I am. He explained that measles, as well as the coxsackie virus, are "sucked up" by MM cells. Giving a mega dose of that virus can make the cells so sick when they suck so much of it up, that they die. He said this is a promising direction of MM treatment and hopefully can be made to work even better. (BTW, we did not talk about this part yesterday, but I have read that you don't want measles antibodies floating around in your body if this is to work. If you have an auto, you may want to bow out of being revaccinated for measles.)
We talked about allos. We had a few people there who'd had them. I asked if our transplant center was doing them with related haplo-matches. This is when you don't have a perfect sibling match. A parent, sibling, or a child can be a half match and they do things to make it less dangerous, in terms of GVHD. He said that a 10/10 unrelated donor would be chosen before a haplo, but, that a related haplo was about as safe as a 9/10 unrelated donor. He said that HUMC is doing more haplos for MM patients than any other center. WOOT WOOT. I liked hearing that.
An aside here: it pays to stay on good terms with your family. That ship has sailed/sunk with Tim's family, but I'm sure they'd pony up a few cells if needed. His sister is a full match, but, starting to collect health issues herself. OY!
So, what else? It was SUCH a great meeting and I took notes because I thought it was such good and current information, I wanted to share with y'all.
Oh, someone mentioned a rash from Rev and said she was allergic. He corrected her. He said that all the IMIDS cause rashes in many people. It is not a true allergy reaction. It is possible to be allergic to them, but, these "functional rashes" are not always indicative of an allergy and sometimes the drug can be continued at a lower does or a different one, like Pomalidomide, can be tried.
Towards the end of the meeting, one gentleman asked him when he thought MM would be considered a "chronic disease." He said, it already is a chronic disease for some people. Look how long some of you have had this. You can live for 20 years and more. He said that for some people, it is a curable disease, and unfortunately, for others it is still a fatal disease.
I think that's it folks. If I remember anything else that seems important, I will add it here, but I think that's all the important stuff.
Again, please understand, where opinions have been repeated here, "your mileage may vary". Many times, this is not a case of what's right or wrong, it's just different. Statistics and studies tell a lot of the story, but every doctor has seen different things happen with his patients and that goes a long way towards forming their opinions on what the best treatment options are. Doctor Siegel mentioned that same type of thing when he was talking about chromosomal issues. There are ALWAYS exceptions. A "high risk" person can respond to chemo very well. You just never know. MM is not one disease, as he says quite often now.
TGIF y'all. Have a great weekend!
Monday, September 8, 2014
I thought this was worth posting here
Someone posted this on one of the MM facebook pages I'm on. I thought it was a very good take on things and I plan to check out her site on FB and get this audio program. I know that I am not a grieving widow, but if anyone tries to tell you that there is not grieving involved when your loved one is diagnosed with a cancer/illness that is rarely cured, well, they just don't know what the hell they're talking about. These things all work just as well when you're trying to support someone who is dealing with any kind of tragedy in their life. If you're like me, then you've had plenty of experience with people saying and doing the wrong things, making your pain about THEM, or just backing out to save themselves the trouble. As the 9-11 anniversary nears, the quote we've often heard, "some rush out while others rushed in", applies with our situations when our loved one was dx'ed with MM. Some stepped up, others ran for the hills. These tips make perfect sense if you want to be a part of the solution, not add to the problem.
"I've been a therapist for more than 10 years. I worked in social services for the decade before that. I knew grief. I knew how to handle it in myself, and how to attend to it in others. When my partner drowned on a sunny day in 2009, I learned there was a lot more to grief than I'd known.
Many people truly want to help a friend or family member who is experiencing a severe loss. Words often fail us at times like these, leaving us stammering for the right thing to say. Some people are so afraid to say or do the wrong thing, they choose to do nothing at all. Doing nothing at all is certainly an option, but it's not often a good one.
While there is no one perfect way to respond or to support someone you care about, here are some good ground rules.
#1 Grief belongs to the griever.
You have a supporting role, not the central role, in your friend's grief. This may seem like a strange thing to say. So many of the suggestions, advice and "help" given to the griever tells them they should be doing this differently, or feeling differently than they do. Grief is a very personal experience, and belongs entirely to the person experiencing it. You may believe you would do things differently if it had happened to you. We hope you do not get the chance to find out. This grief belongs to your friend: follow his or her lead.
#2 Stay present and state the truth.
It's tempting to make statements about the past or the future when your friend's present life holds so much pain. You cannot know what the future will be, for yourself or your friend -- it may or may not be better "later." That your friend's life was good in the past is not a fair trade for the pain of now. Stay present with your friend, even when the present is full of pain.
It's also tempting to make generalized statements about the situation in an attempt to soothe your friend. You cannot know that your friend's loved one "finished their work here," or that they are in a "better place." These future-based, omniscient, generalized platitudes aren't helpful. Stick with the truth: this hurts. I love you. I'm here.
#3 Do not try to fix the unfixable.
Your friend's loss cannot be fixed or repaired or solved. The pain itself cannot be made better. Please see #2. Do not say anything that tries to fix the unfixable, and you will do just fine. It is an unfathomable relief to have a friend who does not try to take the pain away.
#4 Be willing to witness searing, unbearable pain.
To do #4 while also practicing #3 is very, very hard.
#5 This is not about you.
Being with someone in pain is not easy. You will have things come up -- stresses, questions, anger, fear, guilt. Your feelings will likely be hurt. You may feel ignored and unappreciated. Your friend cannot show up for their part of the relationship very well. Please don't take it personally, and please don't take it out on them. Please find your own people to lean on at this time -- it's important that you be supported while you support your friend. When in doubt, refer to #1.
#6 Anticipate, don't ask.
Do not say "Call me if you need anything," because your friend will not call. Not because they do not need, but because identifying a need, figuring out who might fill that need, and then making a phone call to ask is light years beyond their energy levels, capacity or interest. Instead, make concrete offers: "I will be there at 4 p.m. on Thursday to bring your recycling to the curb," or "I will stop by each morning on my way to work and give the dog a quick walk." Be reliable.
#7 Do the recurring things.
The actual, heavy, real work of grieving is not something you can do (see #1), but you can lessen the burden of "normal" life requirements for your friend. Are there recurring tasks or chores that you might do? Things like walking the dog, refilling prescriptions, shoveling snow and bringing in the mail are all good choices. Support your friend in small, ordinary ways -- these things are tangible evidence of love.
Please try not to do anything that is irreversible -- like doing laundry or cleaning up the house -- unless you check with your friend first. That empty soda bottle beside the couch may look like trash, but may have been left there by their husband just the other day. The dirty laundry may be the last thing that smells like her. Do you see where I'm going here? Tiny little normal things become precious. Ask first.
#8 Tackle projects together.
Depending on the circumstance, there may be difficult tasks that need tending -- things like casket shopping, mortuary visits, the packing and sorting of rooms or houses. Offer your assistance and follow through with your offers. Follow your friend's lead in these tasks. Your presence alongside them is powerful and important; words are often unnecessary. Remember #4: bear witness and be there.
#9 Run interference.
To the new griever, the influx of people who want to show their support can be seriously overwhelming. What is an intensely personal and private time can begin to feel like living in a fish bowl. There might be ways you can shield and shelter your friend by setting yourself up as the designated point person -- the one who relays information to the outside world, or organizes well-wishers. Gatekeepers are really helpful.
#10 Educate and advocate.
You may find that other friends, family members and casual acquaintances ask for information about your friend. You can, in this capacity, be a great educator, albeit subtly. You can normalize grief with responses like,"She has better moments and worse moments and will for quite some time. An intense loss changes every detail of your life." If someone asks you about your friend a little further down the road, you might say things like, "Grief never really stops. It is something you carry with you in different ways."
#11 Love.
Above all, show your love. Show up. Say something. Do something. Be willing to stand beside the gaping hole that has opened in your friend's life, without flinching or turning away. Be willing to not have any answers. Listen. Be there. Be present. Be a friend. Be love. Love is the thing that lasts."
Megan Devine is the author of Everything is Not Okay: an audio program for grief. She is a licensed clinical counselor, writer and grief advocate. You can find her at www.refugeingrief.com. Join her on facebook at www.facebook.com/refugeingrief
"I've been a therapist for more than 10 years. I worked in social services for the decade before that. I knew grief. I knew how to handle it in myself, and how to attend to it in others. When my partner drowned on a sunny day in 2009, I learned there was a lot more to grief than I'd known.
Many people truly want to help a friend or family member who is experiencing a severe loss. Words often fail us at times like these, leaving us stammering for the right thing to say. Some people are so afraid to say or do the wrong thing, they choose to do nothing at all. Doing nothing at all is certainly an option, but it's not often a good one.
While there is no one perfect way to respond or to support someone you care about, here are some good ground rules.
#1 Grief belongs to the griever.
You have a supporting role, not the central role, in your friend's grief. This may seem like a strange thing to say. So many of the suggestions, advice and "help" given to the griever tells them they should be doing this differently, or feeling differently than they do. Grief is a very personal experience, and belongs entirely to the person experiencing it. You may believe you would do things differently if it had happened to you. We hope you do not get the chance to find out. This grief belongs to your friend: follow his or her lead.
#2 Stay present and state the truth.
It's tempting to make statements about the past or the future when your friend's present life holds so much pain. You cannot know what the future will be, for yourself or your friend -- it may or may not be better "later." That your friend's life was good in the past is not a fair trade for the pain of now. Stay present with your friend, even when the present is full of pain.
It's also tempting to make generalized statements about the situation in an attempt to soothe your friend. You cannot know that your friend's loved one "finished their work here," or that they are in a "better place." These future-based, omniscient, generalized platitudes aren't helpful. Stick with the truth: this hurts. I love you. I'm here.
#3 Do not try to fix the unfixable.
Your friend's loss cannot be fixed or repaired or solved. The pain itself cannot be made better. Please see #2. Do not say anything that tries to fix the unfixable, and you will do just fine. It is an unfathomable relief to have a friend who does not try to take the pain away.
#4 Be willing to witness searing, unbearable pain.
To do #4 while also practicing #3 is very, very hard.
#5 This is not about you.
Being with someone in pain is not easy. You will have things come up -- stresses, questions, anger, fear, guilt. Your feelings will likely be hurt. You may feel ignored and unappreciated. Your friend cannot show up for their part of the relationship very well. Please don't take it personally, and please don't take it out on them. Please find your own people to lean on at this time -- it's important that you be supported while you support your friend. When in doubt, refer to #1.
#6 Anticipate, don't ask.
Do not say "Call me if you need anything," because your friend will not call. Not because they do not need, but because identifying a need, figuring out who might fill that need, and then making a phone call to ask is light years beyond their energy levels, capacity or interest. Instead, make concrete offers: "I will be there at 4 p.m. on Thursday to bring your recycling to the curb," or "I will stop by each morning on my way to work and give the dog a quick walk." Be reliable.
#7 Do the recurring things.
The actual, heavy, real work of grieving is not something you can do (see #1), but you can lessen the burden of "normal" life requirements for your friend. Are there recurring tasks or chores that you might do? Things like walking the dog, refilling prescriptions, shoveling snow and bringing in the mail are all good choices. Support your friend in small, ordinary ways -- these things are tangible evidence of love.
Please try not to do anything that is irreversible -- like doing laundry or cleaning up the house -- unless you check with your friend first. That empty soda bottle beside the couch may look like trash, but may have been left there by their husband just the other day. The dirty laundry may be the last thing that smells like her. Do you see where I'm going here? Tiny little normal things become precious. Ask first.
#8 Tackle projects together.
Depending on the circumstance, there may be difficult tasks that need tending -- things like casket shopping, mortuary visits, the packing and sorting of rooms or houses. Offer your assistance and follow through with your offers. Follow your friend's lead in these tasks. Your presence alongside them is powerful and important; words are often unnecessary. Remember #4: bear witness and be there.
#9 Run interference.
To the new griever, the influx of people who want to show their support can be seriously overwhelming. What is an intensely personal and private time can begin to feel like living in a fish bowl. There might be ways you can shield and shelter your friend by setting yourself up as the designated point person -- the one who relays information to the outside world, or organizes well-wishers. Gatekeepers are really helpful.
#10 Educate and advocate.
You may find that other friends, family members and casual acquaintances ask for information about your friend. You can, in this capacity, be a great educator, albeit subtly. You can normalize grief with responses like,"She has better moments and worse moments and will for quite some time. An intense loss changes every detail of your life." If someone asks you about your friend a little further down the road, you might say things like, "Grief never really stops. It is something you carry with you in different ways."
#11 Love.
Above all, show your love. Show up. Say something. Do something. Be willing to stand beside the gaping hole that has opened in your friend's life, without flinching or turning away. Be willing to not have any answers. Listen. Be there. Be present. Be a friend. Be love. Love is the thing that lasts."
Megan Devine is the author of Everything is Not Okay: an audio program for grief. She is a licensed clinical counselor, writer and grief advocate. You can find her at www.refugeingrief.com. Join her on facebook at www.facebook.com/refugeingrief
Saturday, September 6, 2014
Connecting through the world wide web
This morning, I signed on to facebook and saw a post I knew was coming. A lovely man from down south, Sarah's honey, Bob, passed away during the night. Another man is on hospice as his wife and 2 20-something year old kids sit helplessly by. The comments on their posts are many, from people all over the place, and many that they never even met. I have said this before, myeloma seems to pick the nicest, kindest, smartest, funniest, coolest people in the world. I've met my share, both in person and via the internet, and I truly believe that. Some years back, a woman from Indianapolis, named Nancy, some may know her as La Cootina, died from MM. In one of her last posts, she mentioned how close she had come to feel to the people she "met" on the internet. She spoke of being surprised
at how much support it had actually provided her. I can say that I definitely feel that way too. Going to my MM support group and interacting with the folks I have met online, is the only time I am around people who know this path I walk with Tim. Being among the younger set of MM couples, it's not like all our peers are dealing with cancer or other life-threatening illnesses. You feel a bond with these MM people automatically, because you know they know your heart, and the angst in your mind because you are facing the same thing. When these people, or their spouses, get really ill, I think about them daily. I put them on the prayer list at my church so their names are read out loud during our service. I pray HARD for them and their families. There is an empathy there that is not imagined. The day that the lovely Paula Kilgallon died, I sobbed like a baby at my computer, with tears streaming down my face. These comments you read on these sad posts show the enormous out-pouring of love and empathy that people really feel for their "brothers and sisters" on this MM rollercoaster with them. Despite our differences, we all have so much in common. 2 years ago, I had a family member say to me, "why do you do this to yourself. Why don't you unplug" and avoid all this? This is brutal watching others die of this." Here's my answer, because we help each other. When Paula's MM crossed into her spinal fluid, she e-mailed me, having seen me comment about this on someone's blog at some point, long before. I went to our support group meeting that day and got the name of the drugs we use here in the states for that condition and gave her the information when I got home. Unfortunately, her doctor used a different drug, and the results were not good. I knew that this rare complication was very often the result of very aggressive disease and seen at the end of someone's MM journey but I didn't say that, because I'd also met a man who beat this manifestation and got more time with his son. But, Paula was worried more about her Bernard than herself. She e-mailed me back and said the relief it gave Bernard to hear there was a treatment was priceless. The UK has a socialized medical system and cannot always get the same meds we have here and I told Paula and "B", that if they wanted to come here, I would have my spare room made up by the time their plane landed, and I meant every word. There were other times that information I had helped someone and many times that someone else's words helped me. This is why we do it. Because we are a sisterhood/brotherhood. Because we are brave and we stick it out and don't run when the going gets tough. Because we know how much we need people to hang in there and be there for us so we damn well hang in there for others in their time of need. Because if there is ANYTHING we can say or do to ease someone's gut-wrenching pain and grief just a smidgen, we're going to say/do it. Because basically, WE ARE SURVIVORS. All of us, even those that we have lost to this %$#&#@ disease. We are a bunch of kind, smart, funny, empathetic people who were thrown together because of MM and we're on this rollercoaster together until a cure is found and beyond. Last night, Tim was flipping through the channels and turned on the Stand up to Cancer show. I came into the kitchen and cried for a few minutes so he couldn't see me. There was a scene that just got to me. This woman was a complete stranger to me but I could still relate to what she was going through. It's too easy to plug myself and my husband and child right into that same scenario because our reality is not that different. Anyone who reads my blog knows that Tim and I have been very sorely disappointed by people who backed out of our lives because they just didn't want to deal with what happened to us. If it were not for my friends at church, the kindness of neighbors and sometimes even strangers, and the support that I've gotten from others dealing with MM that I've met on this internet, I think I'd go bonkers. I read as people, as well as myself, try so hard to send strength and peace and love to others going through unimaginable pain, and it's real. It's as heartfelt and real as you get. So, for me, this is why I stay in there, connected with all these people. Because I have their back, as much as I can have it, and I know they have mine in return. And you just don't throw that kind of love and support away when you are dealing with something as hard as we're all dealing with. It props you up on those days when you don't think your legs can hold you and your heart is breaking. And, these lovely people who have gone from us, they are NEVER forgotten. Never. You hold them in your heart forever.
at how much support it had actually provided her. I can say that I definitely feel that way too. Going to my MM support group and interacting with the folks I have met online, is the only time I am around people who know this path I walk with Tim. Being among the younger set of MM couples, it's not like all our peers are dealing with cancer or other life-threatening illnesses. You feel a bond with these MM people automatically, because you know they know your heart, and the angst in your mind because you are facing the same thing. When these people, or their spouses, get really ill, I think about them daily. I put them on the prayer list at my church so their names are read out loud during our service. I pray HARD for them and their families. There is an empathy there that is not imagined. The day that the lovely Paula Kilgallon died, I sobbed like a baby at my computer, with tears streaming down my face. These comments you read on these sad posts show the enormous out-pouring of love and empathy that people really feel for their "brothers and sisters" on this MM rollercoaster with them. Despite our differences, we all have so much in common. 2 years ago, I had a family member say to me, "why do you do this to yourself. Why don't you unplug" and avoid all this? This is brutal watching others die of this." Here's my answer, because we help each other. When Paula's MM crossed into her spinal fluid, she e-mailed me, having seen me comment about this on someone's blog at some point, long before. I went to our support group meeting that day and got the name of the drugs we use here in the states for that condition and gave her the information when I got home. Unfortunately, her doctor used a different drug, and the results were not good. I knew that this rare complication was very often the result of very aggressive disease and seen at the end of someone's MM journey but I didn't say that, because I'd also met a man who beat this manifestation and got more time with his son. But, Paula was worried more about her Bernard than herself. She e-mailed me back and said the relief it gave Bernard to hear there was a treatment was priceless. The UK has a socialized medical system and cannot always get the same meds we have here and I told Paula and "B", that if they wanted to come here, I would have my spare room made up by the time their plane landed, and I meant every word. There were other times that information I had helped someone and many times that someone else's words helped me. This is why we do it. Because we are a sisterhood/brotherhood. Because we are brave and we stick it out and don't run when the going gets tough. Because we know how much we need people to hang in there and be there for us so we damn well hang in there for others in their time of need. Because if there is ANYTHING we can say or do to ease someone's gut-wrenching pain and grief just a smidgen, we're going to say/do it. Because basically, WE ARE SURVIVORS. All of us, even those that we have lost to this %$#&#@ disease. We are a bunch of kind, smart, funny, empathetic people who were thrown together because of MM and we're on this rollercoaster together until a cure is found and beyond. Last night, Tim was flipping through the channels and turned on the Stand up to Cancer show. I came into the kitchen and cried for a few minutes so he couldn't see me. There was a scene that just got to me. This woman was a complete stranger to me but I could still relate to what she was going through. It's too easy to plug myself and my husband and child right into that same scenario because our reality is not that different. Anyone who reads my blog knows that Tim and I have been very sorely disappointed by people who backed out of our lives because they just didn't want to deal with what happened to us. If it were not for my friends at church, the kindness of neighbors and sometimes even strangers, and the support that I've gotten from others dealing with MM that I've met on this internet, I think I'd go bonkers. I read as people, as well as myself, try so hard to send strength and peace and love to others going through unimaginable pain, and it's real. It's as heartfelt and real as you get. So, for me, this is why I stay in there, connected with all these people. Because I have their back, as much as I can have it, and I know they have mine in return. And you just don't throw that kind of love and support away when you are dealing with something as hard as we're all dealing with. It props you up on those days when you don't think your legs can hold you and your heart is breaking. And, these lovely people who have gone from us, they are NEVER forgotten. Never. You hold them in your heart forever.
Wednesday, August 13, 2014
Robin Williams
It is a very sad week. The suicide of Robin Williams seems to be hitting everyone so hard. My sister, Cathy, called yesterday. As soon as I mentioned his name, she burst into tears and said, "I can't even talk about it." I am always saying that you cannot imagine life in someone else's position. Unless you are in the identical situation, and no one ever really is, you just cannot wrap your brain around someone else's demons and the "cross they bear." I have been feeling down myself dealing with the harshness of the world and the behavior of people. I find myself feeling so hopeless, and helpless. This news out of Gaza is just awful. The bad thing about Facebook is that it keeps me so informed of everything miserable going on in the world. Cruelty to animals, war, indifference, death. I have had to block posts from certain people, as the photos of tortured animals was wounding me so badly. I just see very little evidence of compassion and empathy in this world. The bad seems to be winning out against the good. I am so disillusioned with people. I would think that I would be so jaded by now, after the life I've lived, being screwed over by so many people. But, I still find myself thinking everyone is so nice, only to find out later it was all an act. I just recently had a family member, on MY SIDE this time, do something really horrible to us. It was done during something that was SO important to us, Olivia's sweet 16 camping trip. I am stunned and just SO done with it all. It seems like, despite the nightmare we are living with Tim's MM, people cannot seem to stand anything even remotely good happening to us, they have to destroy it. This was a temper tantrum thrown by a 52-year-old who wasn't getting her way about something so menial, while Tim and I were dealing with our daughter being sick on the 2nd night of her adventure. It was incredibly selfish. There is this Maya Angelou quote that says, "people show you who they are, believe them." I have quoted it on this blog before. I have had to get better at that, as one of the biggest faults I've had is giving people TOO many chances and benefits of the doubt, which only led to me getting hurt repeatedly by the same people. I have always known this person's selfish nature, but, the levels people stoop to, the lack of empathy I witness, it still stuns me. I am angry and not ready to make nice with this person. The truth is, there are no "do-overs" in life and when someone ruins a once-in-a-lifetime event for your family, it's VERY hard to find forgiveness. When it happens repeatedly, and you are trying so hard to make fond memories for your family, knowing that someday, that is all you will have left, well, I don't know how you get past that. I have probably said this before too. I went to a therapist for a short while in 2012. She told me that people will take themselves out of your life to avoid dealing with the pain of what you're going through. They will start fights with you even and then try to blame you for the rift to relieve themselves of the guilt of backing out on you. This seems to be the pattern with certain people in our family and it's SUCH a disappointment. I can honestly say, I have never deserted a friend or family member in their time of need. NEVER. But I am starting to get better at recognizing users and rationing my empathy accordingly. I realized something, while thinking about Robin Williams this week. It's the people with the biggest hearts that suffer the most. They get used the most, hurt the most, feel the most disillusioned, and suffer the pain of everyone around them due to their over-empathetic nature.
I don't know Robin Williams, but, from things I have read, seen, etc., I have to wonder if this is not part of what brought him to that desperate place of just throwing in the towel and saying, "I can't do this anymore." I suspect his humor was in some ways a mask for the pain he was going through. He seemed to be a person who based his happiness on making others happy, but didn't know how to achieve that for himself. Perhaps he gave too much of himself and felt used up and empty inside. Maybe he created this persona for himself and then felt all alone as it was not the real him and he was hiding who he really was, which is exhausting. It's all speculation, but, it all makes me think about a scene in "The Green Mile" where Michael Clark Duncan is telling Tom Hanks that he's tired of people being so awful to each other in this world, that it's like pieces of glass cutting into him, and he wants to be done with it. I stopped watching TV much a few years ago. The news is depressing, reality shows are ridiculous, the shows they are putting on now look more and more like pornography to me, (dating naked, naked and afraid). I just don't want to spend my life minutes watching this trash. Then, on Monday night, I was sitting with Tim while he watched the Fox News channel and the anchor was talking about Robin Williams. It was one more reminder of why I don't watch TV, This idiot, Shepard Smith, had the nerve to say that Robin Williams was a coward for doing what he did. I was so offended, I got off the sofa and left the room. And, he said it under the pretense of thinking about what it would do to his kids. Did he think about what his nasty comment would do to his kids?! This is the problem with this world, everyone is so quick to judge someone they don't even know, have NOTHING in common with, and this jerk says something so vicious, something his kids and loved ones have certainly heard by now, just as they are reeling at the news of this poor man's tragic death. Nothing like adding insult to injury. The lack of tact, empathy, decency, just astounds me. This man has no business being a news anchor, when he can't even show an ounce of respect or compassion for others, or have an iota of common sense to know that you just don't say things like that. If there is any justice at all in this world, (something that also seems in VERY short supply) this jerk will be relieved of his job. But, that's the problem, people get away with things. People are getting more and more desensitized to the feelings of others. One woman defended this news anchor on FB saying everyone has a right to their opinion. Yes, that's true, and something I certainly believe, and that to have a right to your own opinion, you must respect others' rights to theirs. EXCEPT, it is my feeling that I do not have to respect someone's opinion when it causes harm to another living thing. I do not have to respect someone's right to fight dogs, or do hateful things to people or animals. This world is on a dangerous path, one where compassion and humanity are getting harder and harder to find. It is sincerely depressing, and I wonder if Robin Williams saw SO much of that in his 63 years, he just couldn't take it anymore.
I don't know Robin Williams, but, from things I have read, seen, etc., I have to wonder if this is not part of what brought him to that desperate place of just throwing in the towel and saying, "I can't do this anymore." I suspect his humor was in some ways a mask for the pain he was going through. He seemed to be a person who based his happiness on making others happy, but didn't know how to achieve that for himself. Perhaps he gave too much of himself and felt used up and empty inside. Maybe he created this persona for himself and then felt all alone as it was not the real him and he was hiding who he really was, which is exhausting. It's all speculation, but, it all makes me think about a scene in "The Green Mile" where Michael Clark Duncan is telling Tom Hanks that he's tired of people being so awful to each other in this world, that it's like pieces of glass cutting into him, and he wants to be done with it. I stopped watching TV much a few years ago. The news is depressing, reality shows are ridiculous, the shows they are putting on now look more and more like pornography to me, (dating naked, naked and afraid). I just don't want to spend my life minutes watching this trash. Then, on Monday night, I was sitting with Tim while he watched the Fox News channel and the anchor was talking about Robin Williams. It was one more reminder of why I don't watch TV, This idiot, Shepard Smith, had the nerve to say that Robin Williams was a coward for doing what he did. I was so offended, I got off the sofa and left the room. And, he said it under the pretense of thinking about what it would do to his kids. Did he think about what his nasty comment would do to his kids?! This is the problem with this world, everyone is so quick to judge someone they don't even know, have NOTHING in common with, and this jerk says something so vicious, something his kids and loved ones have certainly heard by now, just as they are reeling at the news of this poor man's tragic death. Nothing like adding insult to injury. The lack of tact, empathy, decency, just astounds me. This man has no business being a news anchor, when he can't even show an ounce of respect or compassion for others, or have an iota of common sense to know that you just don't say things like that. If there is any justice at all in this world, (something that also seems in VERY short supply) this jerk will be relieved of his job. But, that's the problem, people get away with things. People are getting more and more desensitized to the feelings of others. One woman defended this news anchor on FB saying everyone has a right to their opinion. Yes, that's true, and something I certainly believe, and that to have a right to your own opinion, you must respect others' rights to theirs. EXCEPT, it is my feeling that I do not have to respect someone's opinion when it causes harm to another living thing. I do not have to respect someone's right to fight dogs, or do hateful things to people or animals. This world is on a dangerous path, one where compassion and humanity are getting harder and harder to find. It is sincerely depressing, and I wonder if Robin Williams saw SO much of that in his 63 years, he just couldn't take it anymore.
Thursday, August 7, 2014
49 tomorrow
How the heck did this happen? I cannot believe my age. The years have flown by in a blur. My kid is driving me around now, my husband is 50. It's just surreal to me. In two years, Liv will graduate high school. As fast as these school years blow by, I know it will be here in no time. It's also weird how you think about this with MM in the picture. Most people curse the racing years and want time to slow down. I am wishing the time away sometimes, because I want our daughter to get through her school years without something happening to Tim. In Nov. of 2007, we went for a 2nd opinion from an MM specialist in NYC who now works at our practice here in NJ. He told us that Tim would not see Liv graduate high school unless he had an allo transplant. Scary, depressing words. A month earlier, Tim's doc had told him that his stem cell transplant failure was a very bad sign and he did not expect him to live long. Again, just devastating. Here are 2 internationally known MM specialists, who've been treating MM since the 80's, and they thought Tim was not going to live past 3 years, maybe 5 on the outside. It just goes to show you that doctors should not put expiration dates on people, no matter what they've seen. It was VERY difficult dealing with that news. There is a mourning that you go through. Sometimes I am resentful of what that did to us and here we are 7 and 1/2 years into this journey. I vividly remember a day at our support group when Tim's doc was our guest and a woman, sitting next to her husband, said with an accusatory tone in her voice, "you told him he had 3 years to live and it's been 9 years and he's still doing well." The doc looked at her, shrugged a bit, and said, "back then, that's what we knew." I read about these folks on the MM facebook sites whose docs are giving them these talks and stats and I want to scream sometimes. I'm sure they are right sometimes, but, the grief this causes, and for those who did not see that happen, I ask, "FOR WHAT?" Quite frankly, we never asked any doctor how long Tim had. They offered that information. UGH! So, while 2 years is still a long time away, and I am not going to bet with my husband's life, I am hopeful. Unfortunately, we had no way of knowing that Tim would do as well as he did and live this long. We had much to be worried about and these docs were telling us he would not do well. We lived our lives in month-long intervals, feeling desperate and overwhelmed. Sometimes, not even that, as you have appointments for blood draws, chemo treatments, and check-ups. But, we sweated out those results on a monthly basis and then it was 2 months and then 3. You pray and worry and then breathe just a bit easier for a little while, but it's never gone. You know that you are just a few numbers on a piece of paper away from being back in the fight for his life. But, we try to be grateful. You feel guilty if you aren't, as we know so many who have not done as well and it is so damn heartbreaking. Some days, it's hard for a realist/pessimist like me to figure this life out. I can't even watch TV anymore and am wounded almost daily by pics of animal cruelty and HUMAN cruelty. It feels like there is no compassion and empathy left in the world and all these great, smart, funny, loving people I have met with MM. Why? I just don't get it. I am one of those people who has a profound need for justice and fairness. There is so little evidence of either around me. You see all these great people get such a raw deal, while these jerks seem to get all the breaks. When people say things to me about not wanting to tell my age, I always tell my age. I tell them that there were times in my life that I did not think I'd make it and I am grateful for all of these years. Lots of them were extremely hard. I do not look back on a life filled with joy and happy times, but, there were some, and I know that as hard as my life has been, there are still others that would trade with me. I've probably said this before, but, some days, it feels like the only thing you have to be grateful for is that the elastic isn't shot in your underwear. And you really do have to start that low and build from there when you're living with the cancer cloud over your head. You learn to be grateful for the most basic things; the fact that you can walk, see, and have the freedom to do the simple things that some others actually aren't able to do. So, as I get older, that's basically how it goes. I have to try a bit harder to find those positives and blessings, OK a LOT harder. But, they're there. So, as I celebrate 49 tomorrow, I will try to count my blessings. Wishing many blessings on y'all too.
Tuesday, July 15, 2014
Milestones
This month has us seeing some milestones that I have dreaded for years. Yesterday, our daughter was driving a car. She had her first driving lesson. Back in the day, we didn't get our permits until we were 16 1/2. Now, they get them at 16, but, they have conditional licenses when they are 17, which we never had. Either way, these kids seem like babies to us. We live in a very (read: OVER) populated area in New Jersey. It's wall-to-wall cars and traffic here and everyone is in a hurry and either talking or texting on a cell phone too. No one uses blinkers anymore, they are steering with one hand and holding their phone with the other. If I was a cop, I'd write people for using cell phones ALL DAY LONG. No warnings, ticket city, baby. 4 years ago, a teenage girl almost mowed me down while I was crossing a street she turned onto while texting. I am STRONGLY against it all. Anyway, I have dreaded my kid driving a car since before I even had a kid. And, the older I get, the more horror stories I've heard, and the more nervous I get. I have decided that she is not driving with her friends right after they get their licenses. So many kids get in accidents in those first few months. I don't need my kid in the car with them for that. This may sound extreme, but, one more tragedy in my life and it's gonna put me over the edge. To say I feel jinxed after the life I've lived, would be an understatement. Plus, I drive to the high school and see these kids cut people off and have all these near misses or accidents even. The first day I had my new-to-me Volvo, a high school kid pulled right out of a side street without seeing me and almost caused us to crash. It was a close call. I bought this Volvo for Liv. Volvo designs their cars purposely to protect the occupants in the event of a crash. But, her friends won't be driving Volvos. Nope, I am a stay-at-home mom for many reasons and one of them is so that I can drive my kid safely wherever she has to go. Thursday and Friday will be her final 2 lessons and then, I have to summon the courage to start letting her drive me around this crazy place. I've always said that THIS is when I will start drinking alcohol, or move to Minnesota, or both. OY! I am so nervous about all this, but I know I have to give her as much experience and pointers that I can before she turns 17 and it's outta my hands. I don't know if I've written this on this blog already, but my younger sister knows a woman whose 14 year old son died being in the car with his 17 year old friend, on a highway right near here. The woman in my bank just told me her nephew crashed his car the first day he had his license and he and his friend died because it burst into flames and they couldn't get out. UGH, I needed to hear that story this past week like I needed a hole in my head. I am going to be doing a whole lot of praying about this. Call me overprotective all ya want, but, you cannot turn back the clock. My nieces and nephews all got in accidents too. Statistics don't lie and the statistics for inexperienced drivers are hair-raising, to say the least.
The second milestone is that Liv is going on vacation without us. She will spend a week in LBI with our friends to hang out with their daughter. Another OY. This will be the first time she is really away from us. I am not looking forward to it at all. Oh, I've gotten used to the sleepovers and the fact that she is out a lot with friends. And, during sports seasons, I drop her off at school at 8 am and don't see her until 6 pm. BUT, this is a whole week away, 8 days really. No one sleeping in her bed at night. I know this is good for her. I want her to be independent and she is not the least bit concerned about being away from us, which I am VERY glad about, but, I will miss her terribly.
So, the kid is growing up. I strongly wished yesterday that she was four again. As with so many things in life, you don't feel ready for them, but, they happen anyway. I'm proud, glad, and petrified all at the same time. This pic of her and Tim was taken in Cape May last week on top of the lighthouse and YES, yours truly hauled her asthmatic, back-injury plagued, out-of-shape, vertigo and claustrophobia toting butt up 188 stairs too. There's our little girl, reaching new heights. I spose I should post the other picture that shows she's reached a higher height than her mom. Just a sec..... There ya go. Yep, she's taller, but I'm still the boss!!! ;o)
The second milestone is that Liv is going on vacation without us. She will spend a week in LBI with our friends to hang out with their daughter. Another OY. This will be the first time she is really away from us. I am not looking forward to it at all. Oh, I've gotten used to the sleepovers and the fact that she is out a lot with friends. And, during sports seasons, I drop her off at school at 8 am and don't see her until 6 pm. BUT, this is a whole week away, 8 days really. No one sleeping in her bed at night. I know this is good for her. I want her to be independent and she is not the least bit concerned about being away from us, which I am VERY glad about, but, I will miss her terribly.
So, the kid is growing up. I strongly wished yesterday that she was four again. As with so many things in life, you don't feel ready for them, but, they happen anyway. I'm proud, glad, and petrified all at the same time. This pic of her and Tim was taken in Cape May last week on top of the lighthouse and YES, yours truly hauled her asthmatic, back-injury plagued, out-of-shape, vertigo and claustrophobia toting butt up 188 stairs too. There's our little girl, reaching new heights. I spose I should post the other picture that shows she's reached a higher height than her mom. Just a sec..... There ya go. Yep, she's taller, but I'm still the boss!!! ;o)
Saturday, July 5, 2014
Cape May
I have been coming to Cape May in the summers since I was a kid. This is the 15th year that we have come to this particular motel with my parents for the 4th of July. We started when Liv was 2. Last year was a horrific trip, with my mom passing out and vomiting while unconscious and winding up in the hospital. Her memory continues to get worse and my father continues to put off retiring, or stepping up to do what's necessary to help her. It is really frustrating. Yesterday, we had rain here. My sister, Cathy, went to Walmart with my parents. She told my father to stay with my mother while she went to buy what she came for. My father, AGAIN, walked away from her and my mom started walking around looking for them and got lost. It was a huge store and it took a while for my sister and father to find my mom. My sister was furious at him and he knew it. It is very hard to deal with this. Tim and I have been doing the "in sickness and in health" thing pretty much our whole relationship. My parents were lucky enough not to have to deal with that until their kids were all grown and they even have adult grandkids now. Still, my father refuses to do what he should be doing and puts on a martyr act for us as to how much he has to deal with. He rolls his eyes and is impatient with her. It's infuriating. SUCK IT UP, Dad. If it were you who was losing your faculties, she'd be taking care of you, without a complaint to be heard.
We have a lot of great memories of this place. We all love Cape May. Things are very different now though, and it's hard not to miss how things once were. My mother used to love the beach. She won't go now, just stays by the pool at the motel. We have to watch her all the time as she will see something and just mosey over there without letting anyone know. One minute she was with us as we walked an outdoor shopping mall, the next minute, she was gone, we found her in the Fudge shop. 15 years ago, we were watching a 2 year old like a hawk in the crowds, now, we're watching my 72 year old mom. Life is hard. And how do we get our father to retire and step up to the plate and do what's right here, without it causing a confrontation? He doesn't want to do it. He can, he is not incapable. He just doesn't want to. Very selfish. OY. Lotsa changes going on, many of them are not the good kind. :o(
Last night, we ran into a family that we used to spend a lot of time with here. We travelled with them for years, (both of our families had trailers.) They have retired now and own a house here, as well as in Florida and they still own their house in northwestern NJ. They spend 4 months at each place. We have not seen them in years and it was great to see them. They have hardly changed, are obviously quite comfortable financially, and enjoying their retirement. The differences were hard for me to see. My parents have changed a whole lot, and their retirement years do not look nearly as rosy. Gotta make the best of it, I suppose. What else can ya do?
Last night, we ran into a family that we used to spend a lot of time with here. We travelled with them for years, (both of our families had trailers.) They have retired now and own a house here, as well as in Florida and they still own their house in northwestern NJ. They spend 4 months at each place. We have not seen them in years and it was great to see them. They have hardly changed, are obviously quite comfortable financially, and enjoying their retirement. The differences were hard for me to see. My parents have changed a whole lot, and their retirement years do not look nearly as rosy. Gotta make the best of it, I suppose. What else can ya do?
Sunday, June 29, 2014
Worth posting
Time is too slow for those who wait,
Too swift for those who fear,
Too long for those who grieve,
Too short for those who rejoice,
But for those who love,
Time is eternity!
It has been over 4 years since a woman, named Nancy, from Indianapolis, died. Some of us in the blog world knew her as La Cootina. She was a spitfire, full of wit and sarcasm. I always checked her blog when I signed on my computer, as she often left me laughing out loud at her posts. When she signed off, this was something that someone posted in the comments. We've lost too many, at far too young an age, to this dreadful disease. I pray for a cure to be found, but it was not soon enough for many REALLY great people that MM stole from us.
Too swift for those who fear,
Too long for those who grieve,
Too short for those who rejoice,
But for those who love,
Time is eternity!
It has been over 4 years since a woman, named Nancy, from Indianapolis, died. Some of us in the blog world knew her as La Cootina. She was a spitfire, full of wit and sarcasm. I always checked her blog when I signed on my computer, as she often left me laughing out loud at her posts. When she signed off, this was something that someone posted in the comments. We've lost too many, at far too young an age, to this dreadful disease. I pray for a cure to be found, but it was not soon enough for many REALLY great people that MM stole from us.
Friday, June 13, 2014
There are days like these
On Fridays, I play a lyric challenge on my Facebook page. I post a lyric, usually from a 1970's song, and people guess what song/artist it is. Sometimes, if it's around a holiday or event, I try to pick something fitting. Tim texted me shortly after leaving for work this morning. He said, "lyric challenge-Butterfly Kisses- on 95.5 now." I turned the radio on to hear the end of the song. I looked up the lyrics and chose the verse that had to do with a daughter's sweet 16 birthday, which is what the song was written about, and also what we are celebrating with Olivia right now, and fitting for Father's Day weekend. I text Tim back and tell him he is an old softy, beneath that tough exterior. He replies, admitting the song made him tear up. I post the lyric challenge on my FB page and then break down sobbing at my kitchen table, because, I know why Tim misted up. Most people would choke up at this song, thinking about how fast their kid(s') childhood went. But, for Tim, it's something more. Much more. He doesn't know how long he has with her. He made her sweet 16. We are taking her and 17 friends camping next weekend to celebrate. But, he cries for a different reason. He thinks about all he might miss. I sobbed for that same reason. Because, as excruciating as this all is for me, I cannot even imagine how painful it is to be the one who might leave and miss so much more. I pull myself together, thinking, "if I let myself go too far down into this grief, I don't know how I'll get out." Then, I see one of those pop-up news items about an Australian rock band member, who just died this morning, after fighting multiple myeloma for 7 years. He must have been diagnosed around the same time as Tim. So, the waterworks start again. My poor sister called from VT in the middle of this, and I cried even more trying to explain what was wrong. Tim and I get a slight reprieve from this MM stuff, only going to the doctor in 3 month intervals, and the fact that he is not on treatment, gives us as normal a life as we can get, under the circumstances, BUT, it is always right there. Reality doesn't take a vacation, not if you're of sound mind. The tears, the fear, the grief. It lays there, right under the surface, and, sometimes, all it takes is a song, or a memory, or a statement, or a news item and it all comes out. Like a volcano, the pressure builds up and then it all blows.Who knew there'd be days like these.
Saturday, June 7, 2014
Holding pattern
I feel like I'm in some state of suspended animation. Tim has been off chemo since May of 2008. When I think of that, I come to the conclusion that it's some kind of miracle. Indeed, we had a lot of people praying for him/us in the beginning, and some who tell me they still are. I mean, this was a man who had an IGG of 10107 when we walked into his MM specialist's office. He'd had strep sepsis when diagnosed and was hospitalized just a few weeks later, again, with an infection in his sinuses. His auto transplant did nothing. How do you have that glass bottle of Melphalan dripped into you(I guess it would eat plastic, it's so toxic) and have it do NOTHING? His doctor flat out told us he was in real trouble after that. He thought he would fast track through all the MM meds and not respond well to them all. How did we wind up in this place where he has avoided treatment for over 6 years? There is some guilt about this, when you see others struggling so bad, or passing on. I just don't understand sometimes what it is that gave us this reprieve. I am grateful, BELEIVE ME, we are SO grateful. It's been so long now, I wonder if I've forgotten just how to live and function in that desperate place that we were in then. The one where I cried whenever I was alone, woke up in the middle of the night and went downstairs to cry. The place where every time you go somewhere, you wonder if you will ever be coming back together. I used to see my husband look around as we drove away from our vacations and know that he was wondering the same thing. I feel like I've become complacent. But, why not. Do I want to live with such crippling fear every day, so that, what?, I feel more prepared for when that other shoe drops? Are you ever prepared? I don't think so. Financially, I think about how we will know when he can't work anymore, and what will happen to us without his income. I mean, if we closed his business then, look what happened, he's been fine and able to work for years now. How do you make MAJOR life decisions when you just don't have a clue how things are going to go. I know I have a long way to go to catch up with things around my house and get myself organized and what am I waiting for? If he goes back on treatment and I am this far behind, it will be chaos for me. Am I purposely doing this, subconsciously thinking it won't happen if I am not "ready". I dunno. This is so strange. Now, his numbers have been creeping up very slowly. Do we have months? years? until we need to go back to that nightmare? Everything is so unsure. People talk about planning vacations and things so far in advance. We've had to cancel vacations because he got sick. I don't believe we're going anywhere until we are on our way now. I don't get myself too excited and don't plan too far in advance. Just seems like a waste of energy to me. Our support system has shrunk in these years. His family is pretty much out. My sister moved to VT and my mom is not well, is losing her memory, so of course I wouldn't expect any support from my parents while they are dealing with their own issues. Most of our neighbors and casual friends don't even realize he still has cancer. They think he beat it. Would we tell Olivia when he goes back on chemo? Honestly, I don't want her worrying. If he goes on Velcade and goes into another remission, something Dr. Durie said is very possible in his case, why get her so upset and scared. We are trying to keep her life as normal as possible. I try not to obsess about all these things, but it's not easy not to "go there" at times. I've come to the conclusion that you just can't plan for what you don't know, but it is SUCH an insecure feeling being where we are. There may be some things you can get in order, but, there's just not much you can do. When tragedy strikes, you fly by the seat of your pants and do what ya gotta do at the time. You put out fires as they crop up. Another MM wife posted today on a Facebook MM page that a family member ranted on to her about what a horrible week she'd had, lost her keys, she said, meanwhile this MM wife is dealing with her husband relapsing. Yeah, we don't live in that place that "normal" people live any more. The day of that diagnosis, you are culled out from the group of people living a normal existence. You are now living in "life or death" reality. It's something I wouldn't wish on anyone. About 2 years ago, I walked to the post office with my dog. It had rained and the ground was wet. A man walked up behind us and my dog jumped up and got her wet paws on his slacks. I did not see him coming so did not react fast enough and apologized profusely. He went off on me, flinging the "f-bomb" and everything, in front of other people. (welcome to Jersey) I was stunned, and as he walked across the street, without even thinking, I called out, "if this is the worst thing that happens to you today, count your blessings." I walked off thinking, I wish my life was that charmed that 2 tiny paw prints on my khakis was my worst problem. I live in fear of losing the love of my life, and watching my daughter's world fall apart, every day. Everyone in my position looks at their mate and tries to imagine what it would be like without them. You don't want to think about it, but you do it out of fear. You think, OK it's been a lonely day, but what if he wasn't coming home from work in a few hours? What if I was going to sleep alone every night, had no one to talk to about what happened today? I can't even imagine. I like my alone time as much as the next gal, but, I get depressed if I'm alone all the time. I'm not content with my own company. I just can't imagine my life like that. I don't want to. I met a woman recently who started dating her husband when she was 15. They were together over 30 years, had 2 kids in their 20's and he died. Had 4 or 5 different cancers. First one hit when the kids were young. Went into remission for 17 years and then MDS hit, probably from the chemo and radiation of long ago. Other cancers followed.
She told me she started dating 6 months after he died. I am not going to think about that stuff for myself, but, I can tell you this, I don't judge her. She agreed with something I have heard other widows say. You start grieving for them while they are still here. She spent the last three years of his life in crisis mode watching him die. She makes no apologies for dating so soon and I don't blame her. The loneliness must be crushing. I feel like I've gotten spoiled these last 6 years and I don't want to go back there to fearing losing him every day. It's still hard to have purely joyful moments with this hanging over our heads, but it's so much harder when you are watching someone take poison, sweating out lab results every few weeks, and wondering how much longer your family will be whole. Every good thing that happens, you still think, is this the last time we'll see this, be here, enjoy this type of event? Everything is bittersweet. Part of being grateful, is knowing things could be worse, and knowing there are many other people who have things so much harder, they would trade places with you. Everything is relative. Compared to them, we appear lucky, but, compared to most, we are living one of their top nightmares. The other day, a family in a neighboring town got a call. I have friends in that town that know this family.Their 19 year old daughter was killed in her apt. by an intruder, while she was attending culinary school in Fort Lauderdale. How do you go on? We went to Fort Lauderdale for our employee's wedding last year. Liv loved it so much she wanted to move there. We have a daughter who might be going away to school in 2 years. I would not want to go on if this happened to us. I just could not imagine conjuring up the desire to get out of bed, ever again. When you look around at all the painful things going on in the world, jeez, what's it all for? Seems that evil is winning out way too much these days. People post these awful pictures of abused animals on facebook and I am horrified so much that I can't get the images out of my mind. The world's gone crazy, and I find myself having a really hard time making sense of it all. I really do. But, I know that I have to find things to be grateful about. I've learned that if you don't you can really get into a funk. I know that there are families like that one in the neighboring town, that can't find a single thing to be grateful about. They will bury their baby and the world won't ever seem right again. I have to continue to play those head games with myself and look for those little mercies God is granting us. They're there, some days, you just have to look really hard for them.
She told me she started dating 6 months after he died. I am not going to think about that stuff for myself, but, I can tell you this, I don't judge her. She agreed with something I have heard other widows say. You start grieving for them while they are still here. She spent the last three years of his life in crisis mode watching him die. She makes no apologies for dating so soon and I don't blame her. The loneliness must be crushing. I feel like I've gotten spoiled these last 6 years and I don't want to go back there to fearing losing him every day. It's still hard to have purely joyful moments with this hanging over our heads, but it's so much harder when you are watching someone take poison, sweating out lab results every few weeks, and wondering how much longer your family will be whole. Every good thing that happens, you still think, is this the last time we'll see this, be here, enjoy this type of event? Everything is bittersweet. Part of being grateful, is knowing things could be worse, and knowing there are many other people who have things so much harder, they would trade places with you. Everything is relative. Compared to them, we appear lucky, but, compared to most, we are living one of their top nightmares. The other day, a family in a neighboring town got a call. I have friends in that town that know this family.Their 19 year old daughter was killed in her apt. by an intruder, while she was attending culinary school in Fort Lauderdale. How do you go on? We went to Fort Lauderdale for our employee's wedding last year. Liv loved it so much she wanted to move there. We have a daughter who might be going away to school in 2 years. I would not want to go on if this happened to us. I just could not imagine conjuring up the desire to get out of bed, ever again. When you look around at all the painful things going on in the world, jeez, what's it all for? Seems that evil is winning out way too much these days. People post these awful pictures of abused animals on facebook and I am horrified so much that I can't get the images out of my mind. The world's gone crazy, and I find myself having a really hard time making sense of it all. I really do. But, I know that I have to find things to be grateful about. I've learned that if you don't you can really get into a funk. I know that there are families like that one in the neighboring town, that can't find a single thing to be grateful about. They will bury their baby and the world won't ever seem right again. I have to continue to play those head games with myself and look for those little mercies God is granting us. They're there, some days, you just have to look really hard for them.
Tuesday, May 13, 2014
This is why
When people tell us all those cliché reasons why we shouldn't be estranged from Tim's family (life's too short, etc.) it only takes a story or two about the things they've done to us to make them see why we are. They change their tune real quick. Yesterday was another one of those days. As Tim says, his family has no filters on their mouths. After ruining so many holidays and vacations and events with their constant fighting and nastiness toward me and others, they still don't get it, that all these friends they lost were sick of hearing it too. A few years ago, Liv was playing her first softball game of the season. We were assistant coaching. She pitched the last 2 innings of a game our other pitcher had lost already, but Liv pitched great and the head coach was so impressed. She threw a great two innings, shut down the other team, and Tim and I were so proud. Tim's father came up to Tim in the dugout and confronted him about an argument we'd had with Tim's sister-in-law,(this was the time we told her she was not welcome in our house that mother's day after ruining the prior Christmas for us with her nasty comment when I bought Tim his new truck). Tim got really upset at his father for bringing this up, and right then to boot, and as I walked up to him, he was angrily telling his father to stay out of it. We went from being proud and happy to really angry in just seconds and another good memory was tainted by them. About the only times we see Tim's parents are at Olivia's games and we don't enjoy them being there. We are civil and I talk to them like nothing ever happened, but, we'd prefer to be able to enjoy our daughter's games without them. The last 2 seasons, Tim even asked me not to tell them about every game so we could just enjoy them together with the other parents. Several times I have had to tell them to be quiet because they get irritated and start yelling out onto the field, either at players or the officials.(in the rec. league, your team can be disqualified if your fans yell at the umpires). You would think they would knock it off after being told once, but not them. They live by their own rules and don't care what anyone else thinks or who they upset with their behavior. Last week, we were sitting on bleachers right by 1st base when one of Liv's good friends, and our 1st basewoman, missed a throw to 1st. My father-in-law nastily said, "you should have had that." Her mother was sitting right next to us and the player, Rachel, heard it and got all nervous and shook up. I told him to be quiet, and my mother-in-law chimed in and said, "well she should have." These people just don't get it. This stuff happens. The girl didn't do it on purpose. Tim's whole family has a "do as I say not as I do" habit. If people said things to them like they say to other people, they'd go ballistic. That whole family just shoots off nasty comments to everyone and thinks everyone should just take it from them. I talked to Tim about what happened with Rachel. He did not hear the whole exchange, he was talking to someone else at the game. He was not happy. We are friends with her parents too. This is a great family that we've known for years and here is Tim's parents insulting their daughter. It's very embarrassing for Tim. We hoped it wouldn't happen again but we both agreed that if it did, he had to be stopped. Yesterday was Liv's final game of the year. It was a really tough season. Liv played extremely well but we have very weak fielding and batting in many of the other girls. But, they are a nice group of kids. Our coach is a bigger problem than that, as she just has no idea what she's doing and makes a lot of mistakes. We won 18-11 yesterday. Liv threw 8 strikeouts and threw out 3 runners, making 11 out of 15 outs herself (we only played 5 innings and were out of time). It was a hard fought win for Liv. The varsity coach took our 1st baseman and shortstop to play for him. The girl our coach put at SS screwed up many times and the coach left her in for 3 innings until she finally put someone else there. Anyway, the girl playing right field is a very good friend of Liv's and not a great player. She only started playing softball last season BUT she tries very hard. In the last inning, when we were trying to make sure we held them, Cheyenne fielded a ball and then made a very bad throw which resulted in runners advancing and maybe even a score, I can't remember exactly. My father-in-law started yelling at her. This 77 year old man was red in the face and furious and starts ripping into a 15 year old girl. I wasn't having it. She could hear him. I spun around to stop him, saying(in a low but VERY angry voice), "shut up, that is Liv's good friend, and you can go the hell home!" I'm just so done with this. He is so out of control. Both Rachel and Cheyenne were just at Liv's birthday party the other night. Great girls. Heck, Cheyenne spent almost the whole weekend over our house a few weeks ago, sleeping over and everything. I took my book(I keep stats for Liv) and walked away, standing by the other set of bleachers for the rest of the game. Old Phil was furious. Cannot tolerate a woman standing up to him, and that woman being ME just drives him insane. Tim had heard him yell at Cheyenne(was a few steps away talking to other parents) and shot over immediately to stop him. I didn't even realize they had gotten into it after I left. My kid was pitching and I was glued to the action on the field. Well, it went like this. My mother-in-law was saying "that was uncalled for" about what I said. Tim said, "it was called for, that is Olivia's good friend and we don't do that here. Do you hear any of these parents yelling and insulting the girls? You did this to Rachel last week too, another friend of Olivia's and the poor girl was embarrassed and upset after you did and her mother was right there. You can't just yell at these kids because they miss plays." Anyway, Phil said, "that's it, I'm done." Apparently, this means he's not coming anymore to which we say, YAY! He was ready to leave right then but it was probably Tim's mom who was not gonna miss the end of the game. Tim's mother actually said that maybe that's why we have such bad players and these parents should all be yelling at the girls, maybe they would play better if we did. REALLY?!!! She is just as bad as he is. Tim and I coached softball for 8 years. I have never seen a girl perform better when she was nervous or upset. I have seen them perform better when we have pumped them up and encouraged them countless times. These people just shoot off their nasty mouths at everyone and then wonder why they never hear from their old friends anymore. DUH!!! And, would it be OK if the parents started yelling at my daughter every time she threw a bad pitch? I can tell ya, it happened twice last year, that people that didn't even know her said something about bad pitches and I was NOT happy, even saying something to a woman next to me about her nasty comment.(she got out of her car, saw one bad pitch and started in, not knowing she was standing next to the pitcher's mother) It's just not necessary. They are kids. Even the pros have their bad days. I am sure Tim's parents would go nuts if people were yelling at their granddaughter. Olivia was the best player on the team this year and last year, as well as the "MVP" in her recreation league team too. We had many parents come up to us this season and say, "we wouldn't have a team if it wasn't for Olivia. She is such a great pitcher and we are so grateful for how hard she has worked. Please tell her we said that." Does she deserve to be yelled at too when she is tired and throws some bad pitches? I did not bother saying good-bye to Phil and he barely grunted Tim's way as they left. They did it again. Ruined/tainted what should have been another positive, wonderful memory for our family. We did not tell Olivia what happened. We're hoping she was too focused on pitching and ending the game to hear what he yelled out to her friend. She ended the game on a strikeout and we were just thrilled. So, THESE are the people who claim to be crushed over all that's happened, just sick over not having a relationship with their son. They still do and say whatever they want with no concern to what it does to us. They think that WE were out of line confronting him and there is nothing wrong with publicly insulting 15 and 16 year old girls who make mistakes on the ball field. They ruined yet another memory for us, as is their norm, and they think that WE did something wrong. I've probably said this before. My father told me once, "Denise, never argue with someone who is dead wrong. It's such a waste of time." That is the case with these people. I just said what I had to to stop his rant and walked away. They have lived their whole lives this way and have a long list of ex-friends to prove it. They'll never change. This is NOT how you support your grandchild at her games, by yelling insults at her best friends. They know those are Liv's grandparents. Besides being obnoxious, it does not reflect well on Olivia. So, game over. We probably won't see them, or at least him, at any more games. Again, not sorry. They ruin things for everyone. So, all those clichés are well and good, but when you see holiday after holiday, vacation after vacation, and all these memorable events ruined but this kind of nastiness, it gets old. We're trying to make good memories for out daughter. It's near impossible if they are involved.
Moving on.
Moving on.
Thursday, May 8, 2014
Sweet 16
Tomorrow is the big day. Olivia turns 16. It's surreal to me. How did it fly by this quickly? Tomorrow also marks 6 years since Tim had a chemo drug put into his body. It doesn't seem like it's been that long, but it has. He had a check-up on this past Friday. His kappa number went up to 36, I think it was. Knocked the kappa/lambda ratio out of normal range too. This bums me out. We saw the head nurse this time, doctors were busy, and she is not worried about it. They see people whose light chain numbers jump by the hundreds so, to them, this is no big deal. To us, it is. His numbers are creeping slowly northward. They are still very low, but, a trend is a trend. Life has been full of medical issues lately. Olivia got what appears to be a staph infection on her leg, maybe even MRSA. The culture did not show anything, but they think/know it was a false negative. I have had some crazy symptoms going on which resulted in another bladder infection and a trip to the urologist, my first ever. I have to go to an ear, nose, and throat doc because I've had some kind of "click," for lack of a better word, in my throat when I swallow. Now, Olivia has to go to a dermatologist because some other kind of process started on the same leg. Tim and I both got pretty sick with colds and sinus infections. At one point, all 3 of us were on antibiotics for different reasons. I've been back and forth to CVS pharmacy so many times, I'm practically on a first name basis with everyone there. SHEESH!
Hopefully, things simmer down for a while. I'm just sick of it. I feel guilty complaining. It's all relative and it's so hard to know so many people who are really struggling and dealing with so much worse than we are. You're ticked and you want to complain, but, then the guilt settles in and you feel like a heel. Suffice to say, there is just a lot of hard stuff swirling all around me and some days, you just get so weary from it all. Can't remember what normal feels like anymore.
Back to the sweet 16. It will be a weekend of parties(Liv's birthday, mother's day) and I am still trying to arrange a camping trip or day trip to the beach for Liv and her buddies. I haven't a clue what to buy my kid, a sure sign that she has too much. (sigh) We have such a small family and she has a nice group of friends but not enough to warrant renting out some place and hiring a DJ. She has been to several sweet 16 parties now. They have fun when they do that dancing and DJ thing, but, in a few of the cases, kids invited all sorts of other kids that they didn't even hang out with just to get bodies there. I just don't understand inviting a whole bunch of kids that you're not friends with, especially to a gift giving event. I'm not OK with that. At the last party where a girl did that, some girl created a whole bunch of drama at the party and really ruined it for the guest of honor. I thought, "well, she is not even your friend and you knew she was trouble, why did you invite her?" Nah, not going down that road. We are taking a whole bunch of them out to dinner and a movie on Sat. night, and then we will try to do a camping overnight or beach day one of these weekends.
After a long, cold, snowy winter and a cool, wet spring, the beach sounds like a pipe dream. But, rumor has it we may hit 80 degrees here next week, and we're starting to see some 70's lately. WOOHOO! Olivia has one more week of softball. She has played great this season but we have a very weak team and a coach who is clueless. It's been great seeing Liv do so well, but she cannot win games by herself. We just try to enjoy it and support the girls as much as possible. The games are played right after school so most parents don't make it, but, our little group tries to cheer them on and I alway bring them snacks for after the games, which they appreciate. So, I guess that is the update. As always, the time feels like it's slipping through our hands like water. Too fast. Just too darn fast for this old girl. Here is a pic of our big girl, pitching on opening day! SO proud of her!!!
Happy mother's day!!!
Hopefully, things simmer down for a while. I'm just sick of it. I feel guilty complaining. It's all relative and it's so hard to know so many people who are really struggling and dealing with so much worse than we are. You're ticked and you want to complain, but, then the guilt settles in and you feel like a heel. Suffice to say, there is just a lot of hard stuff swirling all around me and some days, you just get so weary from it all. Can't remember what normal feels like anymore.
Back to the sweet 16. It will be a weekend of parties(Liv's birthday, mother's day) and I am still trying to arrange a camping trip or day trip to the beach for Liv and her buddies. I haven't a clue what to buy my kid, a sure sign that she has too much. (sigh) We have such a small family and she has a nice group of friends but not enough to warrant renting out some place and hiring a DJ. She has been to several sweet 16 parties now. They have fun when they do that dancing and DJ thing, but, in a few of the cases, kids invited all sorts of other kids that they didn't even hang out with just to get bodies there. I just don't understand inviting a whole bunch of kids that you're not friends with, especially to a gift giving event. I'm not OK with that. At the last party where a girl did that, some girl created a whole bunch of drama at the party and really ruined it for the guest of honor. I thought, "well, she is not even your friend and you knew she was trouble, why did you invite her?" Nah, not going down that road. We are taking a whole bunch of them out to dinner and a movie on Sat. night, and then we will try to do a camping overnight or beach day one of these weekends.
After a long, cold, snowy winter and a cool, wet spring, the beach sounds like a pipe dream. But, rumor has it we may hit 80 degrees here next week, and we're starting to see some 70's lately. WOOHOO! Olivia has one more week of softball. She has played great this season but we have a very weak team and a coach who is clueless. It's been great seeing Liv do so well, but she cannot win games by herself. We just try to enjoy it and support the girls as much as possible. The games are played right after school so most parents don't make it, but, our little group tries to cheer them on and I alway bring them snacks for after the games, which they appreciate. So, I guess that is the update. As always, the time feels like it's slipping through our hands like water. Too fast. Just too darn fast for this old girl. Here is a pic of our big girl, pitching on opening day! SO proud of her!!!
Happy mother's day!!!
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