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.

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.

 

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)

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?

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.

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.

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.