Today, I was excited to go to a lecture given by a "medium." Actually, he admitted he's an extra large.BA-DUM-BUM. True to form, Olivia woke up in the wee hours with what seemed to be the stomach bug. AARRRGGGHHHH! I missed a rare talk and Q & A by Tim's doc because of this same thing some time ago. That kid has timing. Anyway,
she felt fine ever since that 4 am spewing session and this library was only 2 miles from home. I asked if
she felt well enough for me to go and she said yes. With the phone on vibrate, and sneaking in a text or 2, I went and I am SOOOOO glad. The newspaper printed the wrong time so unfortunately, we had to wait a half hour to start for those who had the right time, but I struck up a conversation with the guy and that made the wait worthwhile. He is very nice. I have had a lot of things happen in my life that were a bit, how shall we say, psychic, weird, unexplained, spooky, crazy....take your pick. But some of them are just too much to consider coincidence. As it turns out, this guy wrote several books about ghosts in Cape May and started the trolley ghost tours of that town. I've gone to Cape May since I was a young kid. I've toured or seen these old estates that he showed on his slides. I've seen his books in stores down in Cape May and bought one today that he signed. For those of you who are not familiar, Cape May is the oldest seashore resort in the USA. Most of the buildings there are from the 1700's. There was a huge fire that wiped out a lot of the ones on the main drag and so a lot of them are from the 1800's too, when that was rebuilt. It is located at the southeastern tip of NJ and a popular family getaway down "the shore." We love it there and go every year. We even re-did our house to look victorian due to our love of that era and Cape May. Turns out this guy is even friends with the woman who owned and painted our favorite place down there and inspired the colors we used on our house. Small world. It was really interesting listening to him today. His name is Craig McManus. He has a website of the same name. It also made me think A LOT about the odd things that have happened to me in my life because they happen just as he described they happen to him. I know I am not a medium for sure, but I have had many weird experiences that lead me to believe I'm just slightly sensitive to things of this sort, or crazy. I have the typical things that a lot of people have, and he mentioned. You think of someone you haven't seen or heard from in a long time and the phone rings seconds later and it's them. Or you bump into them the night after you had a dream about them. I've had many dreams come true the next day or week. I've gotten into a habit of telling Tim things sometimes so that if/when it comes true, well, I don't know, it's kinda like documenting it to myself. Way back, when I was friendly with Tim's sister-in-law, she was pregnant with her third child. After 2 boys, she wanted a girl badly but did not find out ahead of time what she was having. Just before her due date, I had
a very vivid dream that she had a girl(not such a feat, it is a 50/50 shot) but I dreamed the baby had a head full of the brightest hue of auburn hair. I called Lee-Ann the next morning and told her about my dream. She just laughed. She and Tim's brother are blondes and both of their boys were born with blonde hair.She said,"I hope you're right about the girl part but there's no way we'd ever have a kid with auburn hair." Well, darned if that baby was not born a few days later with a mass of the exact, vibrant shade of auburn hair in my dream. There is NOBODY in their families who has auburn, or even red, hair. Meg eventually turned blonde but that was some crazy thing. Then there was the time I stayed at a friend's bed and breakfast in Mass. Our first trip there, we stayed on the 3rd floor. I kept telling Tim there was a ghost or something on that floor. One time, I was alone in the hall and got a strong whiff of perfume. Another day, I could not even bring myself to walk up the stairs to my room alone because I felt this presence was standing right at the top of the stairs looking down at me. I felt someone around me everytime I went up there. It was years later that our friends told us that they had several psychics/mediums stay there over the years and tell them they had a ghost on that floor and our friend's cat refused to go on that level of the inn the whole time they lived there.This guy today said that many times ghosts are on top floors as they tend to stay away from where the living people are all the time. Another crazy thing that happened was when Tim's grandmother died. She was going in for what we thought was going to be an hour long surgery. She was 94 so her age made it dangerous, though it was not supposed to be that risky. Tim and I were very close to her. She was scheduled to have surgery at 5 pm. Tim was getting home from work about 2 and we planned to go to the hospital then and wait with her. That morning, I had a vet appt. with Sophie and my sister was coming with me to help. Sophie hated the vet and was strong as an ox. I was running late and had a 10 am appt. Lori was here and it was past time to leave, but for some reason, I had this overwhelming feeling that I had to call Grandma. I felt like something was not letting me walk out the door until I did. I thought, "oh this is ridiculous, I'm late!" but I could not stop the feeling. So I grabbed the phone and called. I told her Tim and I would be there later to wait with her. The last thing I said to her was, "we love you." I hung up and ran off to the vet. Turns out, 10 or 15 minutes after I called, they took her to surgery. She did not survive it. I was the last person to speak to her alive. Later, when Tim got home, I had not heard anything. There were complications and the surgery took hours. I had this feeling she was about to pass over and we raced to the hospital. We got there just when a doctor came out to say her heart had taken on a bad rhythm and a few minutes later, the surgeon came out to say she was gone.
My heart went into such a tachycardia right then, I thought I would be next. What an awful day that was. Just a few months before Tim was dx'ed with MM, his sis-in-law went to a psychic.The person was right on about a bunch of things, even named a lot of her dead relatives, and then told her, "tell Tim that Lois says hello." Lois is Tim's grandmother. I didn't know this until after his grandmother died but Lois is Timothy's grandmother in the bible too.
When Tim's other grandmother died, she was staying in Oregon with Tim's aunt for 6 months. She stayed 6 months with Tim's mom and dad, and then went to her other daughter for half the year. One day, I felt sick quite suddenly. Then this overwhelming feeling of dread came over me. Then she popped into my mind. Tim came home from work and I told him that I thought something was wrong with Grandma. It turns out, at the time this feeling came over me, including the time difference, she fell ill and they had to rush her to the hospital. She died shortly afterward from the illness that overtook her that day. I spoke to his aunt and she said that was the exact time it happened. Very strange. This guy today said that someone's passing can definitely make you more sensitive to this type of thing. He feels we have our loved ones around us all the time guiding us. I wish I could feel that more but he says that if you open yourself up to it, you can become more aware of it. Not surprisingly, there were mostly women there today. I said, "I'll bet that's common with your talks" and he said definitely and that men can be less open to things like this. I've met more women than men who get these gut feelings and little visions but then again, maybe men do just as much but are not prone to speak of it much. I met this guy once whose wife is pretty psychic and his standard answer to it is, "you're all witches!" Just wish I had the guts to sport that bumper sticker that says, "my other ride is a broom." I saw this great idea for one on facebook the other day. It said, "Honk if you love Jesus, text while driving if you want to meet him." Anyway, any of y'all have any psychic stories? Right now, I think I see a chocolate bar in my future. ;o)
Friday, October 7, 2011
Wednesday, October 5, 2011
The art of functional denial
A few years ago, a man whose son has neuroblastoma posted a question on the MM listserv I read, and
I have followed this man's blog about his son and family ever since. Now, while our situation seems like a
nightmare, I don't for a second think it comes close to the pain of having a child with an incurable cancer.
I remember, very vividly, the day Olivia was rushed to an emergency sonagram at 3 y.o. to rule out a mass on her kidney when she started urinating blood. I BEGGED God to spare her and if one of us had to have cancer, make it me and not her.
I do find myself in a bit of a similar position as this man though, in that his child has defied the odds and had a very long stable period, as Tim has as well. We are both in a holding pattern and trying to live as normally as possible despite cancer looming in our lives. He blogged about his really tough past weekend. His dog is dying of cancer and another boy with NB has died. It's so hard not to think about
what lay ahead for his child and family when these reminders come punching through. I spoke to my therapist recently about Tim's attitude as well as my own and she used the phrase, "functional denial." She went on to say that we all know we're going to die someday, but
there is a part of us that doesn't truly believe it or think it will happen for SO long, that we're able to avoid thinking about it enough to go about our merry way.When you have cancer, and one that is not cured at a high rate, one way to deal with it is to use denial to get through the day. As a spouse, this is what I do and Tim relies on it heavily. You have to function so you try to forget what is happening. I "put off" thinking about it.I cling mightily to the things that are positive and try to force the negatives from my thoughts. Unfortunately, this is not a perfect science. There are constant reminders of what is really going on in your life. Oct., being breast cancer awareness month, is a biggie. Seeing others with cancer do poorly, hits way too close to home. My therapist just tells me I "can't go there" when I start thinking of what our future might hold. It's impossible not to sometimes. I've thought a lot about why I do this. I guess the real reason is obvious, Fear. But I also think that you feel you are preparing yourself in some way. The problem with that is it's delusional. There is no way to prepare for what you don't know. There is no way to prepare for losing someone. And, as you go through these horrific scenerios in your head of what the end might be like, you are making yourself live through the grief and misery of something that is NOT happening now and indeed may not happen anywhere's close to what you are imagining. As one MM wife said once, "there will be plenty of time for weeping and wailing later." There is a time for everything. We have to try not to grieve for a person who is alive. As a caregiver, I've got to do my best to live each moment with as much joy as I can possibly muster for as long as I can for Tim's sake, Olivia's and my own. I remind myself, "don't borrow grief from the future." Or to quote my sister again, "jump off that bridge when you get to it."
There's a Bon Jovi song that goes, "it's my life, it's now or never, I ain't gonna live forever, I just wanna live while I'm alive." And as far as dying goes, I won't pretend that I know what Tim thinks and feels in those dark moments. I've had plenty of bad health scares in my life but it's not nearly the same as what he is dealing with. There are a few things that give me a modicum of peace when I think about dying. I had an uncle who died of a massive heart attack as my aunt was pulling into a hospital parking lot with him. She ran in the ER door screaming for help and went to the car and did CPR until they were able to "paddle" him back to life. He made her promise NEVER to have him revived again no matter what. He said, "the dying was the easy part, it was the coming back that was so hard." Now please don't think I am making light of this in any way, but he is the only person I know personally who has died and come back and I will never forget that he said that.
Also, there was the time I saw a woman on Oprah who was dying of breast cancer. She was making videos for her daughter to watch as she got older and came to certain milestones in her life. She told her about boys,make-up and everything she wanted to tell her, on those tapes, before she died. She said that the best thing that had happened to her was that she had gone into cardiac arrest at one point in her journey and had been revived. She had seen the other side and now lived with absolutely no fear of dying. She knew she'd be OK and her kid and husband would be too. She was actually grateful it had happened because it totally changed how she was able to live the rest of her time here. She was at peace and not afraid. What a blessing to have no fear . After Tim was diagnosed, I found myself reading up on things like this. I was reading anything I could get my hands on about dealing with tragedy and, yes, even dying. It didn't help much but I did read one book that made an impact on me. "Embraced by the Light." It was a short book about a woman who had died, for quite a bit of time too, and come back to life. Her doctor, if I recall, even wrote something for this book because he had never witnessed someone be gone for that long and come back. It was a documented case and not just a momentary thing. She wrote about her experience and I found it pretty helpful to read. I wonder sometimes why God would allow people to be so fearful of death. I mean, really, it can be so overwhelming and really keep us from living fully at times. Maybe we're not supposed to be and it's just us, but it sure seems like it would have all been designed a bit better if we were not supposed to be afraid. The only answer I have ever come up with that makes even the slightest bit of sense to me is that if we were not, we would not value our life as much and see it for the gift that it is meant to be. If we all knew, without any doubt, how marvelous it was to be in Heaven, we'd probably off ourselves at the first sign of difficulty here on earth. The not knowing is where faith comes in. We're asked to believe without proof. It is my own personal belief though that there are some people who really are mediums. I'm not talking about those 1-800 number deals. I mean people who really do have this ability, some having been studied and tested. I think God put them here to remind us of what he promised. That dying is not the end. I'm actually going to a lecture on Friday that will be given by a medium. As always, I'm a bit skeptical, but we'll see if he seems legit. Anyhow, sorry for the serious subject matter. Reading this man's blog always makes me ask those "why" questions and then try harder to live for today. If he and his family can do it, I've got no excuse not to.
I have followed this man's blog about his son and family ever since. Now, while our situation seems like a
nightmare, I don't for a second think it comes close to the pain of having a child with an incurable cancer.
I remember, very vividly, the day Olivia was rushed to an emergency sonagram at 3 y.o. to rule out a mass on her kidney when she started urinating blood. I BEGGED God to spare her and if one of us had to have cancer, make it me and not her.
I do find myself in a bit of a similar position as this man though, in that his child has defied the odds and had a very long stable period, as Tim has as well. We are both in a holding pattern and trying to live as normally as possible despite cancer looming in our lives. He blogged about his really tough past weekend. His dog is dying of cancer and another boy with NB has died. It's so hard not to think about
what lay ahead for his child and family when these reminders come punching through. I spoke to my therapist recently about Tim's attitude as well as my own and she used the phrase, "functional denial." She went on to say that we all know we're going to die someday, but
there is a part of us that doesn't truly believe it or think it will happen for SO long, that we're able to avoid thinking about it enough to go about our merry way.When you have cancer, and one that is not cured at a high rate, one way to deal with it is to use denial to get through the day. As a spouse, this is what I do and Tim relies on it heavily. You have to function so you try to forget what is happening. I "put off" thinking about it.I cling mightily to the things that are positive and try to force the negatives from my thoughts. Unfortunately, this is not a perfect science. There are constant reminders of what is really going on in your life. Oct., being breast cancer awareness month, is a biggie. Seeing others with cancer do poorly, hits way too close to home. My therapist just tells me I "can't go there" when I start thinking of what our future might hold. It's impossible not to sometimes. I've thought a lot about why I do this. I guess the real reason is obvious, Fear. But I also think that you feel you are preparing yourself in some way. The problem with that is it's delusional. There is no way to prepare for what you don't know. There is no way to prepare for losing someone. And, as you go through these horrific scenerios in your head of what the end might be like, you are making yourself live through the grief and misery of something that is NOT happening now and indeed may not happen anywhere's close to what you are imagining. As one MM wife said once, "there will be plenty of time for weeping and wailing later." There is a time for everything. We have to try not to grieve for a person who is alive. As a caregiver, I've got to do my best to live each moment with as much joy as I can possibly muster for as long as I can for Tim's sake, Olivia's and my own. I remind myself, "don't borrow grief from the future." Or to quote my sister again, "jump off that bridge when you get to it."
There's a Bon Jovi song that goes, "it's my life, it's now or never, I ain't gonna live forever, I just wanna live while I'm alive." And as far as dying goes, I won't pretend that I know what Tim thinks and feels in those dark moments. I've had plenty of bad health scares in my life but it's not nearly the same as what he is dealing with. There are a few things that give me a modicum of peace when I think about dying. I had an uncle who died of a massive heart attack as my aunt was pulling into a hospital parking lot with him. She ran in the ER door screaming for help and went to the car and did CPR until they were able to "paddle" him back to life. He made her promise NEVER to have him revived again no matter what. He said, "the dying was the easy part, it was the coming back that was so hard." Now please don't think I am making light of this in any way, but he is the only person I know personally who has died and come back and I will never forget that he said that.
Also, there was the time I saw a woman on Oprah who was dying of breast cancer. She was making videos for her daughter to watch as she got older and came to certain milestones in her life. She told her about boys,make-up and everything she wanted to tell her, on those tapes, before she died. She said that the best thing that had happened to her was that she had gone into cardiac arrest at one point in her journey and had been revived. She had seen the other side and now lived with absolutely no fear of dying. She knew she'd be OK and her kid and husband would be too. She was actually grateful it had happened because it totally changed how she was able to live the rest of her time here. She was at peace and not afraid. What a blessing to have no fear . After Tim was diagnosed, I found myself reading up on things like this. I was reading anything I could get my hands on about dealing with tragedy and, yes, even dying. It didn't help much but I did read one book that made an impact on me. "Embraced by the Light." It was a short book about a woman who had died, for quite a bit of time too, and come back to life. Her doctor, if I recall, even wrote something for this book because he had never witnessed someone be gone for that long and come back. It was a documented case and not just a momentary thing. She wrote about her experience and I found it pretty helpful to read. I wonder sometimes why God would allow people to be so fearful of death. I mean, really, it can be so overwhelming and really keep us from living fully at times. Maybe we're not supposed to be and it's just us, but it sure seems like it would have all been designed a bit better if we were not supposed to be afraid. The only answer I have ever come up with that makes even the slightest bit of sense to me is that if we were not, we would not value our life as much and see it for the gift that it is meant to be. If we all knew, without any doubt, how marvelous it was to be in Heaven, we'd probably off ourselves at the first sign of difficulty here on earth. The not knowing is where faith comes in. We're asked to believe without proof. It is my own personal belief though that there are some people who really are mediums. I'm not talking about those 1-800 number deals. I mean people who really do have this ability, some having been studied and tested. I think God put them here to remind us of what he promised. That dying is not the end. I'm actually going to a lecture on Friday that will be given by a medium. As always, I'm a bit skeptical, but we'll see if he seems legit. Anyhow, sorry for the serious subject matter. Reading this man's blog always makes me ask those "why" questions and then try harder to live for today. If he and his family can do it, I've got no excuse not to.
Sunday, October 2, 2011
Animals in church and a multi blog hello.
First I want to say, in case any of these folks stop by, that I am having computer problems again and there are several blogs that I cannot leave comments on. Being the computer illiterate that I am, I don't have a clue
why this happens but want these messages to get through somehow. SEAN, I want you to know I am praying for you and will be sending lots of thoughts your way as you have your allo. I included yours and Paula's name, along with some others, as I often do, in our church prayers today and a church full of devout Lutherans prayed for you all today. Deb. I have been keeping up with your blog. I'm glad to hear your strength is coming back. Sorry
I haven't been able to comment with any words of support. There are a few others I'm having trouble with so if you haven't heard from me, it's this darned computer stuff again. I'm still following along.
Speaking of church, the little Episcopal church on the corner had their annual blessing of the animals service today. Usually, they just have this outdoors and bless the animals one by one after a brief little service. Today, they invited a bunch of animal rescue places and other vendors to set up tables and made it a whole afternoon "paws fest." We took Lacey and spent a bit of time there. Then they had the service INSIDE the church. I thought, "you're kidding, right?!" Nope, there were bulldogs sitting on pews and cats and even a huge tortoise named Soupy, who lives at our town pet store, came to get blessed.
There had to be close to 200 people there and dogs everywhere. A fight even broke out in the main aisle
as the pets formed 2 lines to be blessed by the pastors. One siberian husky started howling/singing when the
opening song was sung. It was CRAZY. But the best part is the woman who walked in with the duck. She
sat right down front and the pastor had a hard time keeping from laughing as you heard QUAAAACK, quack, quack, quack, QUAAAAACK, quack, quack while he did the service. SO damn funny. Between all the pups she met and the treats that were handed out, Lacey had a ball. I wish that I'd brought my video camera. It was surreal to see this church just packed with animals. I'm sure glad I was not on the clean-up crew.
why this happens but want these messages to get through somehow. SEAN, I want you to know I am praying for you and will be sending lots of thoughts your way as you have your allo. I included yours and Paula's name, along with some others, as I often do, in our church prayers today and a church full of devout Lutherans prayed for you all today. Deb. I have been keeping up with your blog. I'm glad to hear your strength is coming back. Sorry
I haven't been able to comment with any words of support. There are a few others I'm having trouble with so if you haven't heard from me, it's this darned computer stuff again. I'm still following along.
Speaking of church, the little Episcopal church on the corner had their annual blessing of the animals service today. Usually, they just have this outdoors and bless the animals one by one after a brief little service. Today, they invited a bunch of animal rescue places and other vendors to set up tables and made it a whole afternoon "paws fest." We took Lacey and spent a bit of time there. Then they had the service INSIDE the church. I thought, "you're kidding, right?!" Nope, there were bulldogs sitting on pews and cats and even a huge tortoise named Soupy, who lives at our town pet store, came to get blessed.
There had to be close to 200 people there and dogs everywhere. A fight even broke out in the main aisle
as the pets formed 2 lines to be blessed by the pastors. One siberian husky started howling/singing when the
opening song was sung. It was CRAZY. But the best part is the woman who walked in with the duck. She
sat right down front and the pastor had a hard time keeping from laughing as you heard QUAAAACK, quack, quack, quack, QUAAAAACK, quack, quack while he did the service. SO damn funny. Between all the pups she met and the treats that were handed out, Lacey had a ball. I wish that I'd brought my video camera. It was surreal to see this church just packed with animals. I'm sure glad I was not on the clean-up crew.
Thursday, September 29, 2011
It is what it is
I started going to a therapist a few months ago. I had a disastrous stab at this 3 years ago and figured I'd
find someone else and give it another go. She's nice. A transplanted Brit. My sister just asked me how it's going and I don't really know if it's helping me. I mean, after 4 1/2 years of being on the MM roller coaster, I've learned a thing or
two about what you have to do to be able to function while living in this bad dream. There's nothing this woman can say to me that changes my situation. Life is a constant struggle of trying
to live in the moment. Kids do this with flair. Adults, and more to the point, those of us prone to worry in the
first place, have a hard time of it. There are financial concerns that force you to think about the future.
MM did not hit us in our retirement with monthly incomes, paid off homes, and medicare on board. PS tells me that of course
you have to deal with practical matters but any other time you find yourself thinking about the future, just tell yourself, "you can't go there." Well, I do, but there's an underlying level of depression that is always there when you live like this. I don't know how long I will continue to see her. Sure she
makes a suggestion here or there, but it's rarely anything I haven't thought of, I'm just more likely to do it because she may ask me if I did at the next appt. We lost a wonderful woman from our support group a few weeks ago. When you have constant reminders of what is really going on in your life, there's no running from the truth. I
had meant to start keeping in touch with her via e-mail between meetings but when I finally did, her son replied to tell me she had passed away. We lost a man too. Pretty darn sobering.
I still recall reading 2 or 3 years ago that some doctors/researchers think we'll have the cure for MM within 10 years. I don't know how you make a guess like that but if it's true that a cure is on the horizon, I sure hope they hurry. I know that allos can cure but not often enough. A certain MM spec. says he's curing
some folks of MM without an allo but I suppose we need time to see if that's true. In the meantime, it is painful and so sad to see people do poorly and lose their battle with this damned disease. I don't know what it is about falling asleep. Maybe you let your defenses down or something, but that is when I can suddenly wake with overwhelming emotions of fear and grief about what we're dealing with. I start to tear up and have to stop my thoughts immediately as it feels like I'll fall right down into a hole I can't get out of. Tim goes for his appts. this coming month. These 3 month intervals are a Godsend. Not that I forget about MM for even a day, but there was a time when we felt like all we did was truck back and forth to his oncologist and sit in that waiting room. We know what it's like to be in active treatment and have Tim fighting for his life. Now, we know what it's like to have a time of remission. It's like all the cliches, " the calm before the storm", "waiting for the other shoe to drop." No matter what, you are caught in a hyper alert stance, though I honestly think Tim does an incredible job of pushing MM from his mind. Wish I was as good at that. I am as relaxed as I think I can get under the circumstances. Many people tell me they're amazed at how I hold up. Well, falling apart completely( in private, when he was first dx'ed and for a long time afterward) was not much fun and it's not a place you can function well from. I wonder sometimes if we are passing up the opportunity to cure Tim. His sis is an HLA match. There are things that could happen to her medically that would make her unable to donate. We're not getting any younger. Since being tested 4 years ago, she has been diagnosed with type 2 diabetes and hypothyroidism.
Tim's doc says these don't matter but there are other things that do.Should we be doing this now while he is strong and has very minimal disease, and she is healthy? Probably, but it's hard to make that decision when things are going smoothly. Heck, it's hard to make that decision anytime. So, we plug along. Take each day as it comes. As always, being grateful for the positives and trying not to dwell on the negatives. Tim stays super busy at work which is a huge help to him mentally. I drag my feet doing things I don't want to do and
then get so behind, it's ridiculous. The time flies. Before we know it, it will be Christmas. We are 4 1/2 years into this journey and I know we are incredibly blessed that Tim defied the odds that his docs had given him. Just wish I could slow things down a bit, but speed up that cure thing, but like all things, it is what it is. We wait and we pray.
find someone else and give it another go. She's nice. A transplanted Brit. My sister just asked me how it's going and I don't really know if it's helping me. I mean, after 4 1/2 years of being on the MM roller coaster, I've learned a thing or
two about what you have to do to be able to function while living in this bad dream. There's nothing this woman can say to me that changes my situation. Life is a constant struggle of trying
to live in the moment. Kids do this with flair. Adults, and more to the point, those of us prone to worry in the
first place, have a hard time of it. There are financial concerns that force you to think about the future.
MM did not hit us in our retirement with monthly incomes, paid off homes, and medicare on board. PS tells me that of course
you have to deal with practical matters but any other time you find yourself thinking about the future, just tell yourself, "you can't go there." Well, I do, but there's an underlying level of depression that is always there when you live like this. I don't know how long I will continue to see her. Sure she
makes a suggestion here or there, but it's rarely anything I haven't thought of, I'm just more likely to do it because she may ask me if I did at the next appt. We lost a wonderful woman from our support group a few weeks ago. When you have constant reminders of what is really going on in your life, there's no running from the truth. I
had meant to start keeping in touch with her via e-mail between meetings but when I finally did, her son replied to tell me she had passed away. We lost a man too. Pretty darn sobering.
I still recall reading 2 or 3 years ago that some doctors/researchers think we'll have the cure for MM within 10 years. I don't know how you make a guess like that but if it's true that a cure is on the horizon, I sure hope they hurry. I know that allos can cure but not often enough. A certain MM spec. says he's curing
some folks of MM without an allo but I suppose we need time to see if that's true. In the meantime, it is painful and so sad to see people do poorly and lose their battle with this damned disease. I don't know what it is about falling asleep. Maybe you let your defenses down or something, but that is when I can suddenly wake with overwhelming emotions of fear and grief about what we're dealing with. I start to tear up and have to stop my thoughts immediately as it feels like I'll fall right down into a hole I can't get out of. Tim goes for his appts. this coming month. These 3 month intervals are a Godsend. Not that I forget about MM for even a day, but there was a time when we felt like all we did was truck back and forth to his oncologist and sit in that waiting room. We know what it's like to be in active treatment and have Tim fighting for his life. Now, we know what it's like to have a time of remission. It's like all the cliches, " the calm before the storm", "waiting for the other shoe to drop." No matter what, you are caught in a hyper alert stance, though I honestly think Tim does an incredible job of pushing MM from his mind. Wish I was as good at that. I am as relaxed as I think I can get under the circumstances. Many people tell me they're amazed at how I hold up. Well, falling apart completely( in private, when he was first dx'ed and for a long time afterward) was not much fun and it's not a place you can function well from. I wonder sometimes if we are passing up the opportunity to cure Tim. His sis is an HLA match. There are things that could happen to her medically that would make her unable to donate. We're not getting any younger. Since being tested 4 years ago, she has been diagnosed with type 2 diabetes and hypothyroidism.
Tim's doc says these don't matter but there are other things that do.Should we be doing this now while he is strong and has very minimal disease, and she is healthy? Probably, but it's hard to make that decision when things are going smoothly. Heck, it's hard to make that decision anytime. So, we plug along. Take each day as it comes. As always, being grateful for the positives and trying not to dwell on the negatives. Tim stays super busy at work which is a huge help to him mentally. I drag my feet doing things I don't want to do and
then get so behind, it's ridiculous. The time flies. Before we know it, it will be Christmas. We are 4 1/2 years into this journey and I know we are incredibly blessed that Tim defied the odds that his docs had given him. Just wish I could slow things down a bit, but speed up that cure thing, but like all things, it is what it is. We wait and we pray.
Thursday, September 22, 2011
Autumn in Jersey
This is my back to school life:
Driving my kid around so much, as well as the occasional friend(s), that I need to paint my mommy van
yellow with black checkers.
Doing gobs of paperwork that I CAN'T stand.
Tenants breaking a lease and re-renting an apartment that was contracted to be rented until February.(First showing and it was a done deal. A personal record of 24 hours.)
Meeting with the president of the football league to try to do something about bullying problems with their players. I am co-founder of a parent based, anti-bullying group.
TONS of household chores that I do not want to do either.
Seeing another yard sale season go by with me not having the time to do one.
Seeing another warm season end when the chores to finish construction on our house were not fit in.
Various school functions and meetings
Soccer games and football games(this is pretty fun.)
Listening to how tired and stressed my husband is from having so much work.
Wondering when I will ever start exercising and get rid of this weight I've gained.
Stalling on scheduling doctor appts. I'm due for.
Switching clothes out for the cold weather and bumming over how many of them don't fit anymore.
Wishing for the zillionth time since Tim's diagnosis that we could spend our time doing what we WANT to do
instead of all the crap that we MUST.
Everyone says "live for today" and "seize the moment."
How in the world do you do that?
Driving my kid around so much, as well as the occasional friend(s), that I need to paint my mommy van
yellow with black checkers.
Doing gobs of paperwork that I CAN'T stand.
Tenants breaking a lease and re-renting an apartment that was contracted to be rented until February.(First showing and it was a done deal. A personal record of 24 hours.)
Meeting with the president of the football league to try to do something about bullying problems with their players. I am co-founder of a parent based, anti-bullying group.
TONS of household chores that I do not want to do either.
Seeing another yard sale season go by with me not having the time to do one.
Seeing another warm season end when the chores to finish construction on our house were not fit in.
Various school functions and meetings
Soccer games and football games(this is pretty fun.)
Listening to how tired and stressed my husband is from having so much work.
Wondering when I will ever start exercising and get rid of this weight I've gained.
Stalling on scheduling doctor appts. I'm due for.
Switching clothes out for the cold weather and bumming over how many of them don't fit anymore.
Wishing for the zillionth time since Tim's diagnosis that we could spend our time doing what we WANT to do
instead of all the crap that we MUST.
Everyone says "live for today" and "seize the moment."
How in the world do you do that?
Saturday, September 17, 2011
Starting off the school year
Well Olivia has made it through her first full week of this school year, or maybe WE have made it. Her first day of school, I woke with a horrible neck and headache that lasted all day and the next day, I woke up with severe vertigo and could not even walk, my head was spinning so bad. SPLENDID! Thank heavens for Bonine. Though she is only in the 8th grade,
she is now going to the high school. She spent the first few days getting lost in the building and sometimes
going to the wrong class(they use a 4 day rotating schedule that drops and picks up certain classes). She seems to like it, though the amount of homework has tripled and she is not pleased about that. She does both soccer and cheerleading in the fall season so she usually has a practice or game 6 days a week, making it hard to fit in all the homework. They won the 1st soccer game of the season today and Liv scored one of the goals. Then we drove to see our nephew's football game and they creamed their opponents. It's kinda fun, kinda hectic getting back into the whole grind of school. We have to leave the house a half hour earlier in the morning.
The last school she went to was not even a mile from our house. The highschool is 2.5 miles but the TRAFFIC is insane. The first day of school, it took us a half hour to get her to school and get home. CRAZY. Considering the towns around here are about 3 to 4 miles across but have populations
upwards of 10 thousand people each, you can imagine that's a lot of darn cars on the road. I am now driving a roundabout way to get to school but at least I avoid sitting in bumper to bumper traffic until the last block or so. Liv also got retainers this week to try to correct a few bite issues before she moves on to full braces. MAN I did not know how pricey braces were. I thought maybe I'd hop on that bandwagon and get my askew front tooth straightened a bit but 6 thousand dollars times 2, forget it. This guy is so busy, it's hard getting appointments with him. I told Olivia she should DEFINITELY become an orthodontist. KA-CHING. I took the 5% off, pay all up front option and I think the dentist's wife is out buying coach pocketbooks and shoes today with Tim's hard earned money. So anyway, onto the fall. We live a pretty boring life so it's nice to get out and socialize at all these sports functions. Even Lacey has been loving it. I take
her to the new dog park where Liv's soccer games are, just down our street. She made some new dog friends. Today, she met Fred the beagle and I think Fred is "head over paws" in love with our little Lacey. He
was baying at her and finally Lacey broke down and talked to him. Everyone was laughing at this little beagle conversation. They stood there on point, looking at each other and he would bark, then she would answer. Very cute. After Liv's friend's soccer game was finished and I left to go help her with our chairs, Fred cried for Lacey and followed her all the way down the fence line. He layed down and watched her every move until we came back his way toward our car. He started barking at her
and followed her every move down the fence again. The whole time, Lacey was barely giving him a glance. Playing a little "hard to get", I guess. He was adorable. Same age as her but a bit smaller. I better watch him though. It appears he still has all his "original equipment" so no wonder he hasn't "lost that lovin' feeling."
Got a call from my older sis who is touring California with my parents, while at the dog park. She called from Tahoe. Color me jealous. Someday, I should force myself back on a plane and go there. Tim and Liv want to go and I wouldn't mind a CA trip either if it weren't for the flying part. Oh well, time to make the donuts. Happy Fall!
she is now going to the high school. She spent the first few days getting lost in the building and sometimes
going to the wrong class(they use a 4 day rotating schedule that drops and picks up certain classes). She seems to like it, though the amount of homework has tripled and she is not pleased about that. She does both soccer and cheerleading in the fall season so she usually has a practice or game 6 days a week, making it hard to fit in all the homework. They won the 1st soccer game of the season today and Liv scored one of the goals. Then we drove to see our nephew's football game and they creamed their opponents. It's kinda fun, kinda hectic getting back into the whole grind of school. We have to leave the house a half hour earlier in the morning.
The last school she went to was not even a mile from our house. The highschool is 2.5 miles but the TRAFFIC is insane. The first day of school, it took us a half hour to get her to school and get home. CRAZY. Considering the towns around here are about 3 to 4 miles across but have populations
upwards of 10 thousand people each, you can imagine that's a lot of darn cars on the road. I am now driving a roundabout way to get to school but at least I avoid sitting in bumper to bumper traffic until the last block or so. Liv also got retainers this week to try to correct a few bite issues before she moves on to full braces. MAN I did not know how pricey braces were. I thought maybe I'd hop on that bandwagon and get my askew front tooth straightened a bit but 6 thousand dollars times 2, forget it. This guy is so busy, it's hard getting appointments with him. I told Olivia she should DEFINITELY become an orthodontist. KA-CHING. I took the 5% off, pay all up front option and I think the dentist's wife is out buying coach pocketbooks and shoes today with Tim's hard earned money. So anyway, onto the fall. We live a pretty boring life so it's nice to get out and socialize at all these sports functions. Even Lacey has been loving it. I take
her to the new dog park where Liv's soccer games are, just down our street. She made some new dog friends. Today, she met Fred the beagle and I think Fred is "head over paws" in love with our little Lacey. He
was baying at her and finally Lacey broke down and talked to him. Everyone was laughing at this little beagle conversation. They stood there on point, looking at each other and he would bark, then she would answer. Very cute. After Liv's friend's soccer game was finished and I left to go help her with our chairs, Fred cried for Lacey and followed her all the way down the fence line. He layed down and watched her every move until we came back his way toward our car. He started barking at her
and followed her every move down the fence again. The whole time, Lacey was barely giving him a glance. Playing a little "hard to get", I guess. He was adorable. Same age as her but a bit smaller. I better watch him though. It appears he still has all his "original equipment" so no wonder he hasn't "lost that lovin' feeling."
Got a call from my older sis who is touring California with my parents, while at the dog park. She called from Tahoe. Color me jealous. Someday, I should force myself back on a plane and go there. Tim and Liv want to go and I wouldn't mind a CA trip either if it weren't for the flying part. Oh well, time to make the donuts. Happy Fall!
Saturday, September 3, 2011
Blue Grass and Jesus
http://www.vtcucc.org/churches/EastHardwick.html
While in VT on vacation, I happened to notice an ad in the local paper that said there would be a blue grass band performing at the Sunday service in this tiny little post-civil war Congregational Church just down the street from my in-laws' house(link above). I figured I had to check this out. Tim and Liv took a pass as did my in-laws.
I have to say, it was the sweetest little service I have ever been to and I was sorry they missed it. There were only 16 people there and that included the 3-piece band and one of their kids, the organist, and the Deacon, who ran the service because the Pastor was not there. The music was great. Everyone knew everyone, 'cept me of course, and gosh, it was really moving and warm and fuzzy and memorable. Just a toe-tapping good time. The band was 2 guys, who both played acoustic guitars and banjos, and the one guy's wife, who played a bass guitar. The guys did all the singing. At the conclusion of the service, the whole congregation, all 16 of us, got up and formed a circle, held hands and sang(or in my case, mouthed the words to) "Til we meet again." DO YOU GET any more warm and fuzzy than that?! The Deacon started the service with this speech. I asked if he had a copy of it after the service and he gladly gave me his. I must say, it made us all laugh out loud and then it made me think. He said:
"If you can be cheerful, ignoring aches and pains,
If you can resist complaining,
If you can eat the same food everyday and be grateful for it,
If you can understand when your loved ones are too busy to give you any time,
If you can take criticism and blame without resentment,
If you can face the world without lies and deceit,
If you can conquer tension without medical help,
If you can relax without liquor,
It you can sleep without the aid of drugs,
If you can honestly say that deep in your heart you have no prejudice against creed, color, religion, gender
preference, or politics,
THEN, you have ALMOST reached the same level of development
As your dog."
I thought this was hysterical. But then it also made me think of something. One is obviously expecting the last line to say something like, "you are blessed" or "living a Godly life" or something about Jesus. Instead it made me think that my dog is a MUCH better Christian than I am because I can't say that I can do ALL of those things, consistantly. So a lot of us folks who love pets and hope so much that the ones we have loved do go to Heaven so we can see them again,......well.......maybe the reality is that our pets are a shoo-in to get to Heaven and THEY may be worried if WE are going to "make the cut" so they can see us in the here-after. Just sayin'. ;o)
Maybe I have to start taking cues from my puppy. :o)
While in VT on vacation, I happened to notice an ad in the local paper that said there would be a blue grass band performing at the Sunday service in this tiny little post-civil war Congregational Church just down the street from my in-laws' house(link above). I figured I had to check this out. Tim and Liv took a pass as did my in-laws.
I have to say, it was the sweetest little service I have ever been to and I was sorry they missed it. There were only 16 people there and that included the 3-piece band and one of their kids, the organist, and the Deacon, who ran the service because the Pastor was not there. The music was great. Everyone knew everyone, 'cept me of course, and gosh, it was really moving and warm and fuzzy and memorable. Just a toe-tapping good time. The band was 2 guys, who both played acoustic guitars and banjos, and the one guy's wife, who played a bass guitar. The guys did all the singing. At the conclusion of the service, the whole congregation, all 16 of us, got up and formed a circle, held hands and sang(or in my case, mouthed the words to) "Til we meet again." DO YOU GET any more warm and fuzzy than that?! The Deacon started the service with this speech. I asked if he had a copy of it after the service and he gladly gave me his. I must say, it made us all laugh out loud and then it made me think. He said:
"If you can be cheerful, ignoring aches and pains,
If you can resist complaining,
If you can eat the same food everyday and be grateful for it,
If you can understand when your loved ones are too busy to give you any time,
If you can take criticism and blame without resentment,
If you can face the world without lies and deceit,
If you can conquer tension without medical help,
If you can relax without liquor,
It you can sleep without the aid of drugs,
If you can honestly say that deep in your heart you have no prejudice against creed, color, religion, gender
preference, or politics,
THEN, you have ALMOST reached the same level of development
As your dog."
I thought this was hysterical. But then it also made me think of something. One is obviously expecting the last line to say something like, "you are blessed" or "living a Godly life" or something about Jesus. Instead it made me think that my dog is a MUCH better Christian than I am because I can't say that I can do ALL of those things, consistantly. So a lot of us folks who love pets and hope so much that the ones we have loved do go to Heaven so we can see them again,......well.......maybe the reality is that our pets are a shoo-in to get to Heaven and THEY may be worried if WE are going to "make the cut" so they can see us in the here-after. Just sayin'. ;o)
Maybe I have to start taking cues from my puppy. :o)
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