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.

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!

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

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.

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)