So, I have mentioned before how hard it is to get angry at my husband, even when it is deserved, and then feel guilty afterward because he has cancer. Well, the same goes for my kid. It is a hard row to hoe to raise a child that was dealt this awful hand of having a dad with cancer. I feel so sorry for her all the time. She did not get through her childhood without her world being turned upside down. But, the world still is a hard place and she is not going to get a free pass from everyone because her dad has cancer. And, I don't want to raise her to be a victim, always feeling sorry for herself or expecting a break all the time. I can't. That does not empower her as a person. Last week, she "rushed" to join a sorority that she wanted very badly to get into. During this time, she missed 2 days of classes because her stomach was upset. We're pretty sure the first time was something she ate and the second time might have been nerves. It was the final day when she was to find out if she made it. She did. She was/is very happy, except for the fact that her closest friends did not make it in.
Some backround on what's been going on with her in college: she has made a lot of friends and is out at parties every weekend and even some weeknights too. She is happy and having a blast. She made the dean's list with a 3.8 gpa, but, these are all gen ed. classes and she's not being challenged much. That's great, it was her first semester so I'm glad she was not overwhelmed, but, we have warned her that she is not getting enough sleep. She thinks it's funny, that this is what you do when you're a college kid. She spent much of her 1st semester unable to shake a cold. She doesn't get home from these parties until 2 am and doesn't necessarily go to bed even then. There are times she's hanging with friends until 4 am. Well, we went down to see her for Tim's birthday, basically said that, OK it's back to business now, rushing is over, etc. and what does she do? sleeps through her first class Monday. Actually got up and made it to a teacher conference and then was so tired when she got back to her dorm, she zonked out thru her next class. I read her the riot act. While Tim and I are stressing over how we are going to afford 4 years of that school, and warning her over and over that her schoolwork comes first, and that we expect her to start looking for a summer job, she is just living la vida loca. I told her that if she doesn't rein it in, she can forget being part of this sorority (which I just found out is going to cost $700 to join) I also told her that this had better NOT ever happen again and that she is to march right down to her advisor and declare her major, as I've been bugging her to do for weeks. I'm so done with her lackadaisical attitude. I'm really afraid when she starts getting into her major classes, she's in for a rude awakening at how much harder they will be and if she doesn't maintain a 3.0 gpa, she loses her scholarship and we can't afford the school without it.
Then, the guilt set in. I spent all this morning feeling bad. And I shouldn't. She deserved to get "what for" for this. I am sick and tired of people not listening to me and then I get to pay the price for their bad decisions. This is MY money, dammit. So, in a weak moment last week after she got into the sorority, I was gonna pay the fee. I hadn't told her yet, and now I've changed my mind. Told her this morning that it was coming out of her money. This is a social thing, has nothing to do with her earning a degree. If she wants it, she can pay for it. I also told her that she'd better shape up, that it's not fair that her father and I are stressed out over affording this school and she's putting her social life before her homework and studies. I can't back down. This is a serious financial hardship for us and she has got to start taking that seriously. And if she doesn't, well, then I'm going to put more and more of her "skin in the game." I already took out the government deferred loans in her name when she whined and complained about applying for outside scholarships and didn't get a single one. I told her I am not paying for any sorority costs at all. And, if she keeps it up, I will take out more school loans and forget paying for this ourselves. She can graduate with 120K in debts. I told her this morning that she had better start holding up her end of the deal.
Tim starting chemo on Friday and our tenant informing us the other day that she might be breaking our lease doesn't help matters. I am trying to be sure that I am not taking any of that out on her. I don't think I am. After missing 5 classes just last week, this stunt she pulled yesterday just ain't gonna fly. It threw me into a funk that I have not recovered from yet.
It's tough to be a mom in this day and age. It's just ridiculously hard to be a mom with a husband who has myeloma. I would really love to run away from all my responsibilities and party all the time. But, this whole thing comes unglued if I do that. Right now, I feel like I am on the verge of becoming unglued. It just keeps getting harder and harder to dust myself off and stand back up.
My sister sent me a long message in a card with a bracelet yesterday. I put it on as soon as I opened it. It says, "BREATHE." Some days, I feel like that's all I can manage.
Tuesday, February 7, 2017
Friday, February 3, 2017
53
Today, February 3rd, is Tim's birthday. He is 53. He was diagnosed with myeloma just over a month after his 43rd birthday. To say I am grateful that he is here 10 years later, that he has been off chemo since our daughter's 10th birthday, over 8 and 1/2 years ago, and that he got to see her grow to be an adult, well, that would be an understatement. I am beyond grateful. So many answered prayers and memories made in these 10 years.
BUT, I am also still angry and bereft that this happened to him and us in the first place. We may have been able to step back from the front line of battle these last 8+ years but I have never felt that we were out of the fox hole. We lived our lives in 1 to 3 month installments, sweating out lab results and every ache and illness. He has been hospitalized several times. And, we knew the other shoe would drop eventually. Life is still hard. VERY hard.
Today, after he gets home from work, we will drive down to see our kid at college and take in a basketball game she has to work this evening. Tomorrow he has a PET CT scan. No escaping reality for very long for us. Next Friday, he is planned to re-start chemo. It's hard to be cheery about what this year holds for us. I have to try, as I always struggle to do, to live in the moment and take it a day at a time.
Trying to move forward with my word of the year.......HOPE.
Happy birthday, Tim! You are my everything!
BUT, I am also still angry and bereft that this happened to him and us in the first place. We may have been able to step back from the front line of battle these last 8+ years but I have never felt that we were out of the fox hole. We lived our lives in 1 to 3 month installments, sweating out lab results and every ache and illness. He has been hospitalized several times. And, we knew the other shoe would drop eventually. Life is still hard. VERY hard.
Today, after he gets home from work, we will drive down to see our kid at college and take in a basketball game she has to work this evening. Tomorrow he has a PET CT scan. No escaping reality for very long for us. Next Friday, he is planned to re-start chemo. It's hard to be cheery about what this year holds for us. I have to try, as I always struggle to do, to live in the moment and take it a day at a time.
Trying to move forward with my word of the year.......HOPE.
Happy birthday, Tim! You are my everything!
Monday, January 23, 2017
So much for the UNITED States of America.....we may have to change our name
Well, I suppose I just have to say this somewhere that I won't invite attack. Oh, it's not that I've kept my feelings secret, but, I don't want to start a firestorm over something I have no control over and I need to vent. The night I started to see that Trump would win the election, I had to turn off the TV and go to bed. The nightmare I was having while awake, was probably worse than I could have asleep. Now, before I go on, I want to say, for the record; I respect everyone's right to their own opinion. If I don't, I do not deserve the right to my own. I have, many times, had people call me names and get irate with me for not agreeing with their opinions, even over the most mundane things (it's one of many reasons I don't hang out with my out-laws anymore), but, I have always felt that respect is a two-way street. You can't demand respect, or anything else for that matter, from other people and then not expect it from yourself. I have little patience for double standards like that. But, there comes a gray area, one that makes you struggle to respect people and their opinions. For me, that gray area comes when people hurt other living things, people or animals, either physically or emotionally. I have said before, I am an over-empathizer. Because of that, I've spent much of my life being appalled at the cruelty that people are capable of, as well as feeling helpless to stop it. Though, I have stopped it when it was in my power to do so. But, I don't think I have to respect people's opinions, or those people, when it involves hurting people or animals. Then, all bets are off and they're just scum to me.
This election: so many things to be said about it, but I will just hit the highlights. The democratic party really screwed up. They thought Hillary had a chance of winning this, based on her husband's supporters and the fact that it was this crazy man that she'd be running against. They never thought he would win, he seemed to tighten the noose every time he opened his mouth. Obviously, they were wrong. Now, mind you, I do not immerse myself in politics, I find it too frustrating and corrupt, so, I don't know ALL the details and won't get into the nitty-gritty. I do not particularly like Hillary. There are some who say she has been investigated for SO much, but nothing stuck so she must be innocent. Well, even though I think some of that stuff was trumped up, I believe there is also some truth to the saying, "where there's smoke, there's fire." I don't think she's innocent of it all. The one thing that really changed my mind about her was the tell-all book that came out. I have read some quotes from that book and she was a tyrant in the white house when Bill was president. She has an awful temper and treated people horribly. If this book were not true, she would have sued all those people for slander and defamation of character. There were too many witnesses. She didn't have a leg to stand on and she knew it. She is no saint, that is for sure. I really would have preferred Mike Bloomberg for president, but I voted for her because I can't stand Trump and I think he's dangerous. I have always said that he is the most pompous person ever and I have never had a stomach for people like that. In fact, I used to say it was a toss-up between him and Kanye West, so when I saw them together, I had to laugh. That must have been some screwed up pi$$ing contest between those two, for sure.
We were in NYC years ago and Trump was signing his book in the lobby of his 5th Avenue building. Tim wanted to go in and see him. He's a bit star struck by celebrities, I am not. I couldn't have cared less to see Trump. I went in to get out of the cold, but refused to join the crowd around him. He's just repulsive to me. Lying, misogyny, bullying, narcissism......any one of these traits would knock anyone clear off my list, but he hits all the deal-breakers for me. He's an over-achiever in bad personality traits.
Anyway, I was not going to turn the TV on Friday. But, I did. It was like watching a train wreck. I couldn't look away. I listened to his speech and stood in my kitchen, shaking my head. He was still campaigning. And he was insulting everyone seated around him, the entire government, Washington DC, and, yes, this entire country of ours. Wh-wh-WHAT???!!! THIS was supposed to speak of healing and unity. And then, he insults all these people, basically tells them they are all a pathetic waste, and now he will expect them to work with him. This man has no edit button, no class, no idea what the word "diplomacy" means. The people in my country elected a total head case to be president. He is such a narcissist, he actually lies, even about things that he said on camera, and thinks people are so dumb they will just believe his lies. Well, I guess in a way, he sees that his lying has convinced enough to get him elected, so I suppose it works for him. This is a person who is not capable of "playing nice in the sandbox." A person who can't get along with others is RUNNING OUR COUNTRY. It's hard to wrap my brain around. I read something the other day that said the Republican party did this all as a ploy to get Pence in there as president. They knew Pence would not get elected and they think Trump will be impeached. These days, who knows? It might be true. I've seen their corrupt ways too many times to give them the benefit of the doubt about anything now. Heck, I don't think George Bush was really elected for either of his terms. I think it was likely fixed both times. I trust no one at this point.
Later on, at the parade, I watched DT walk for a block or so, with secret service all over the place and the TV commentators talking of the danger. I shook my head again, over why his 10 year old son was walking right next to him, in front of him at some points. I thought that was a dumb move. Why put this kid in danger? As a parent, there is NO WAY I would have put my kid's life in danger like that. Then, when they got back into the car, he walked in front of both his wife and his young son and got in first. For a second, Melania stood there and then realized she would have to go around and get in the other side now, so she did. But, there was Trump, already in the car, with his son still standing outside of it. All this danger and YOU DIVE INTO THE CAR AND LEAVE YOUR WIFE AND KID OUTSIDE???!!! I couldn't take it anymore. How narcissistic and disrespectful can you be? I had to walk away from the TV.
In the end, there's a part of me that wants this guy to fail, badly, right off the bat, and get thrown out of office. There would be a big lesson learned by a lot of people. But, there are also so many problems in my country, and I don't want to be "wishing the pilot to crash the plane I'm on," so I would like to see this administration make some positive changes. The sad part is, I just have little to no hope of that. He is already appointing family members and rich cronies to posts they have no experience for. But, the main reason I have little hope is that I also know this one fact, which, sadly, I think people, even those who voted for him, are going to learn the hard way. Narcissists, (and I believe he has a classic case of narcissistic personality disorder) only serve one master......themself. They do not serve God, they do not put others first, not even their family members or friends. They are not good public servants because they really don't care about their fellow man. They only care about themselves. Even when they try to cloak their true self with good deeds, the agenda always comes back to what that accomplishes for THEM. They are trying to manipulate others' opinions of them, win them over. I have lived this with people I HAD in my life. It's diabolical. It's easy to be taken in by it sometimes, the clues can be very subtle, but Trump is so blatant, I don't know how so many people have fallen for it. I believe his real motivation is stoking his ego and his bank account. That has always been his motivation for everything he has done in 70 years. It won't change now. He's already showing it.
So, in line with my word of HOPE for 2017, I have to try to spin this somehow. So my hope is this; I hope something good comes out of this in some way or another. It is usually the most disastrous mistakes in our lives that teach us the most valuable lessons. Those are the painful lessons, no doubt, but, if we're smart, we know better than to ever make those mistakes again and we take our newfound knowledge and move forward as better people, again, IF WE'RE SMART. Maybe this crazy time in my country's history will bring about positive changes in how things are done around here. I dunno, maybe we will look back on this and say that, in the end, it was a good thing it happened. One can only HOPE.
This election: so many things to be said about it, but I will just hit the highlights. The democratic party really screwed up. They thought Hillary had a chance of winning this, based on her husband's supporters and the fact that it was this crazy man that she'd be running against. They never thought he would win, he seemed to tighten the noose every time he opened his mouth. Obviously, they were wrong. Now, mind you, I do not immerse myself in politics, I find it too frustrating and corrupt, so, I don't know ALL the details and won't get into the nitty-gritty. I do not particularly like Hillary. There are some who say she has been investigated for SO much, but nothing stuck so she must be innocent. Well, even though I think some of that stuff was trumped up, I believe there is also some truth to the saying, "where there's smoke, there's fire." I don't think she's innocent of it all. The one thing that really changed my mind about her was the tell-all book that came out. I have read some quotes from that book and she was a tyrant in the white house when Bill was president. She has an awful temper and treated people horribly. If this book were not true, she would have sued all those people for slander and defamation of character. There were too many witnesses. She didn't have a leg to stand on and she knew it. She is no saint, that is for sure. I really would have preferred Mike Bloomberg for president, but I voted for her because I can't stand Trump and I think he's dangerous. I have always said that he is the most pompous person ever and I have never had a stomach for people like that. In fact, I used to say it was a toss-up between him and Kanye West, so when I saw them together, I had to laugh. That must have been some screwed up pi$$ing contest between those two, for sure.
We were in NYC years ago and Trump was signing his book in the lobby of his 5th Avenue building. Tim wanted to go in and see him. He's a bit star struck by celebrities, I am not. I couldn't have cared less to see Trump. I went in to get out of the cold, but refused to join the crowd around him. He's just repulsive to me. Lying, misogyny, bullying, narcissism......any one of these traits would knock anyone clear off my list, but he hits all the deal-breakers for me. He's an over-achiever in bad personality traits.
Anyway, I was not going to turn the TV on Friday. But, I did. It was like watching a train wreck. I couldn't look away. I listened to his speech and stood in my kitchen, shaking my head. He was still campaigning. And he was insulting everyone seated around him, the entire government, Washington DC, and, yes, this entire country of ours. Wh-wh-WHAT???!!! THIS was supposed to speak of healing and unity. And then, he insults all these people, basically tells them they are all a pathetic waste, and now he will expect them to work with him. This man has no edit button, no class, no idea what the word "diplomacy" means. The people in my country elected a total head case to be president. He is such a narcissist, he actually lies, even about things that he said on camera, and thinks people are so dumb they will just believe his lies. Well, I guess in a way, he sees that his lying has convinced enough to get him elected, so I suppose it works for him. This is a person who is not capable of "playing nice in the sandbox." A person who can't get along with others is RUNNING OUR COUNTRY. It's hard to wrap my brain around. I read something the other day that said the Republican party did this all as a ploy to get Pence in there as president. They knew Pence would not get elected and they think Trump will be impeached. These days, who knows? It might be true. I've seen their corrupt ways too many times to give them the benefit of the doubt about anything now. Heck, I don't think George Bush was really elected for either of his terms. I think it was likely fixed both times. I trust no one at this point.
Later on, at the parade, I watched DT walk for a block or so, with secret service all over the place and the TV commentators talking of the danger. I shook my head again, over why his 10 year old son was walking right next to him, in front of him at some points. I thought that was a dumb move. Why put this kid in danger? As a parent, there is NO WAY I would have put my kid's life in danger like that. Then, when they got back into the car, he walked in front of both his wife and his young son and got in first. For a second, Melania stood there and then realized she would have to go around and get in the other side now, so she did. But, there was Trump, already in the car, with his son still standing outside of it. All this danger and YOU DIVE INTO THE CAR AND LEAVE YOUR WIFE AND KID OUTSIDE???!!! I couldn't take it anymore. How narcissistic and disrespectful can you be? I had to walk away from the TV.
In the end, there's a part of me that wants this guy to fail, badly, right off the bat, and get thrown out of office. There would be a big lesson learned by a lot of people. But, there are also so many problems in my country, and I don't want to be "wishing the pilot to crash the plane I'm on," so I would like to see this administration make some positive changes. The sad part is, I just have little to no hope of that. He is already appointing family members and rich cronies to posts they have no experience for. But, the main reason I have little hope is that I also know this one fact, which, sadly, I think people, even those who voted for him, are going to learn the hard way. Narcissists, (and I believe he has a classic case of narcissistic personality disorder) only serve one master......themself. They do not serve God, they do not put others first, not even their family members or friends. They are not good public servants because they really don't care about their fellow man. They only care about themselves. Even when they try to cloak their true self with good deeds, the agenda always comes back to what that accomplishes for THEM. They are trying to manipulate others' opinions of them, win them over. I have lived this with people I HAD in my life. It's diabolical. It's easy to be taken in by it sometimes, the clues can be very subtle, but Trump is so blatant, I don't know how so many people have fallen for it. I believe his real motivation is stoking his ego and his bank account. That has always been his motivation for everything he has done in 70 years. It won't change now. He's already showing it.
So, in line with my word of HOPE for 2017, I have to try to spin this somehow. So my hope is this; I hope something good comes out of this in some way or another. It is usually the most disastrous mistakes in our lives that teach us the most valuable lessons. Those are the painful lessons, no doubt, but, if we're smart, we know better than to ever make those mistakes again and we take our newfound knowledge and move forward as better people, again, IF WE'RE SMART. Maybe this crazy time in my country's history will bring about positive changes in how things are done around here. I dunno, maybe we will look back on this and say that, in the end, it was a good thing it happened. One can only HOPE.
Friday, January 13, 2017
UH OH
I think I just accidentally erased a post I just wrote as well as 2 whole years of posts. HELP. Anyone know how to retrieve them?
Monday, March 16, 2015
Everything's different for us
I have, many times, said that Tim's cancer diagnosis felt like a huge meat cleaver coming down and separating us out from the rest of the crowd. Our lives were no longer normal. MM changed everything. Today was one of those days that drives that point home. After dropping Liv at school, I came home and Tim and I got into a conversation before he left for work. He's had a rough few weeks. Our employee wound up sick 2 weeks ago and came in that way. Tim asked him to stay home the next day because he did not want to get sick but it was too late, he came down with it a few days later. Then, our employee wound up in the hospital having hand surgery due to an infection that formed when he got a splinter (working on a side job of his own) that he did not get all the way out. He is now out on temporary disability and my husband is doing the job of 2 men, while sick.
If you have followed my blog, then you know that it is my belief that my husband's MM was caused by the chemical exposures of being a wood flooring contractor for almost 3 decades now. Tim prefers to think it was just fate. I have heard of others in the same business getting MM, via the myeloma Facebook sites, but I don't tell him. It does not help him to think he did this to himself by not wearing protective gear. But this morning, as he was about to leave for work, he was exhausted and just wanted to go back to bed. He said, "I have to kill myself to make a dollar" and the words were like that damn meat cleaver going right through my heart. For others, that is a figurative saying, for us, it's probably true. The way he made his living may literally cost him his life. UGH. PAINFUL to know that. I told him to become a cop. Why didn't he listen? I told him to wear the respirator. He didn't listen then either.
At 10 am, I had to go back to school and pick Liv to bring her to an orthopedist. She has had knee issues since her growth spurt 4 years ago and they have not resolved. I was not too worried, so many of her friends have the same thing and her pediatricians have checked her out. But the pain has been bad enough that, at her last physical, her doctor and I decided it's time to have a real trained eye look at them. So, we went this morning. What a great guy. He was SO nice to Liv. But, for us, or at least me, this appointment did not go down like it would in a normal family. I had to download paperwork and fill it out ahead of time. It asked questions about her parents' history, which included whether either of us had cancer. I had to answer that Tim did, wrote to the side of the checked box that it was MM. Then, because I learned the hard way that you can NEVER be sure, not even with doctors, I had to write a note and staple it to that sheet, knowing the doc would glance at it before he came in the room. It said, "Please note !!! I do not want my husband's cancer discussed in front of our daughter. The doctor has no way to know exactly how much information we have shared with her about it." I folded the sheets in my purse so she could not see them. The thought that he could say anything in front of her about having to rule out MM due to the family history made my blood run cold. When we walked into the waiting room, I pointed to the seats furthest from the desk and said "wait here." I then went to the desk, placed the sheets in front of the gal, and said quietly to her, "the doctor must see this note and please do not read it out loud." She said, "OK." Despite knowing in my heart that this knee issue was nothing serious, you cannot be totally at ease about it. I have heard of too many teenagers with MM. I have heard of too many families that have multiple cases. I recently read that many MM'ers have joint pain too. I heard years ago that when MM is the familial form, it can hit the next generation 10 years earlier than it hit the previous one. Tim was 43 when dx'ed and had it for a while before diagnosis. As parents, you always have that worry in the back of your mind. Between Tim's cancer and all my health issues and scares over the years, no doctor appointment is ever "normal" for us. A lovely nurse took Liv to do x-rays. I stood in that exam room alone, praying
the whole time. In times like these, praying takes a form that seems more like begging. My prayers were, "Please God, we've been given more than our share of grief to deal with. I don't even know if this poor child remembers her life before this tragedy with Tim's MM hit. Have mercy on us, Please. NO MORE TRAGEDIES." They came back into the room and another nurse was loading the x-rays up on the computer screen right in front of us a few minutes later. I was afraid to look. I knew if I saw so much as one dark circle or heard the term lytic lesion, I was going to lose it and someone would have to peel me off the floor. I waited for the doc to get there and looked. Thank Heavens, she is fine. Her x-rays looked great and she has this common "travelling patella" issue that so many girls have and even women into their 20's. In doctors' terms- bilateral patellofemoral syndrome. In my terms, mercy.
After getting her lunch, I drove her to school. There is a gal she is friends with that she and her friends sometimes find irritating. We know their whole family well. They go to our church and Tim has done floors for several of them too. This girl's aunt is dying. I just spoke to her father(it's his sister) in church yesterday. His mom had to move in to care for her and they have stopped all treatment. She has metastatic liver cancer. They thought she beat it a few years back. It returned. I told Liv, "I know that Britt can be a pain, but be nice to her. Her aunt is dying." This is a childless aunt who is always so great to her nieces and nephews, so I compared her to my sister, who is similar that way. I said this is a horrible thing. Britt's grandmother is watching her child die and it's hard for all of them. I told her that everyone has their trials in life and you should always remember that and try to be kind.
One of her favorite songs had come on the radio and we laughed because the first line is, "when your legs don't work like they used to" or something like that. Having just found out that her patellas go places they're not supposed to, she told me that she and her friend, Emily, who has the same thing, always point to their knees when they hear the line. I told her that she is a very lucky girl and to remember that if you have your health, that's the most important thing. I said what you have here is a common thing and no big deal but there are so many kids dealing with poor health or serious learning disabilities, and she knows some. I said, "you have none of that. Your brain works great and your body too. You are a lucky girl. Be grateful for that Grace in your life." I hope some of these things I tell her sink in to that brain of hers. The kid doesn't listen to me much. But, it's hard to have that thought run through my head, silently, whenever I tell her something like this, because her luck isn't great where her dad's health is concerned. And his bad health is enough to severely affect her life. Very sad. Very hard. Everything is different for us. Every situation is changed because MM is in the picture. And it's just something we have to deal with. For today, my husband and I are holding on to the fact that she is healthy. We know not every parent can say that about their kid right now. We are grateful. We are blessed. And we move forward.
If you have followed my blog, then you know that it is my belief that my husband's MM was caused by the chemical exposures of being a wood flooring contractor for almost 3 decades now. Tim prefers to think it was just fate. I have heard of others in the same business getting MM, via the myeloma Facebook sites, but I don't tell him. It does not help him to think he did this to himself by not wearing protective gear. But this morning, as he was about to leave for work, he was exhausted and just wanted to go back to bed. He said, "I have to kill myself to make a dollar" and the words were like that damn meat cleaver going right through my heart. For others, that is a figurative saying, for us, it's probably true. The way he made his living may literally cost him his life. UGH. PAINFUL to know that. I told him to become a cop. Why didn't he listen? I told him to wear the respirator. He didn't listen then either.
At 10 am, I had to go back to school and pick Liv to bring her to an orthopedist. She has had knee issues since her growth spurt 4 years ago and they have not resolved. I was not too worried, so many of her friends have the same thing and her pediatricians have checked her out. But the pain has been bad enough that, at her last physical, her doctor and I decided it's time to have a real trained eye look at them. So, we went this morning. What a great guy. He was SO nice to Liv. But, for us, or at least me, this appointment did not go down like it would in a normal family. I had to download paperwork and fill it out ahead of time. It asked questions about her parents' history, which included whether either of us had cancer. I had to answer that Tim did, wrote to the side of the checked box that it was MM. Then, because I learned the hard way that you can NEVER be sure, not even with doctors, I had to write a note and staple it to that sheet, knowing the doc would glance at it before he came in the room. It said, "Please note !!! I do not want my husband's cancer discussed in front of our daughter. The doctor has no way to know exactly how much information we have shared with her about it." I folded the sheets in my purse so she could not see them. The thought that he could say anything in front of her about having to rule out MM due to the family history made my blood run cold. When we walked into the waiting room, I pointed to the seats furthest from the desk and said "wait here." I then went to the desk, placed the sheets in front of the gal, and said quietly to her, "the doctor must see this note and please do not read it out loud." She said, "OK." Despite knowing in my heart that this knee issue was nothing serious, you cannot be totally at ease about it. I have heard of too many teenagers with MM. I have heard of too many families that have multiple cases. I recently read that many MM'ers have joint pain too. I heard years ago that when MM is the familial form, it can hit the next generation 10 years earlier than it hit the previous one. Tim was 43 when dx'ed and had it for a while before diagnosis. As parents, you always have that worry in the back of your mind. Between Tim's cancer and all my health issues and scares over the years, no doctor appointment is ever "normal" for us. A lovely nurse took Liv to do x-rays. I stood in that exam room alone, praying
the whole time. In times like these, praying takes a form that seems more like begging. My prayers were, "Please God, we've been given more than our share of grief to deal with. I don't even know if this poor child remembers her life before this tragedy with Tim's MM hit. Have mercy on us, Please. NO MORE TRAGEDIES." They came back into the room and another nurse was loading the x-rays up on the computer screen right in front of us a few minutes later. I was afraid to look. I knew if I saw so much as one dark circle or heard the term lytic lesion, I was going to lose it and someone would have to peel me off the floor. I waited for the doc to get there and looked. Thank Heavens, she is fine. Her x-rays looked great and she has this common "travelling patella" issue that so many girls have and even women into their 20's. In doctors' terms- bilateral patellofemoral syndrome. In my terms, mercy.
After getting her lunch, I drove her to school. There is a gal she is friends with that she and her friends sometimes find irritating. We know their whole family well. They go to our church and Tim has done floors for several of them too. This girl's aunt is dying. I just spoke to her father(it's his sister) in church yesterday. His mom had to move in to care for her and they have stopped all treatment. She has metastatic liver cancer. They thought she beat it a few years back. It returned. I told Liv, "I know that Britt can be a pain, but be nice to her. Her aunt is dying." This is a childless aunt who is always so great to her nieces and nephews, so I compared her to my sister, who is similar that way. I said this is a horrible thing. Britt's grandmother is watching her child die and it's hard for all of them. I told her that everyone has their trials in life and you should always remember that and try to be kind.
One of her favorite songs had come on the radio and we laughed because the first line is, "when your legs don't work like they used to" or something like that. Having just found out that her patellas go places they're not supposed to, she told me that she and her friend, Emily, who has the same thing, always point to their knees when they hear the line. I told her that she is a very lucky girl and to remember that if you have your health, that's the most important thing. I said what you have here is a common thing and no big deal but there are so many kids dealing with poor health or serious learning disabilities, and she knows some. I said, "you have none of that. Your brain works great and your body too. You are a lucky girl. Be grateful for that Grace in your life." I hope some of these things I tell her sink in to that brain of hers. The kid doesn't listen to me much. But, it's hard to have that thought run through my head, silently, whenever I tell her something like this, because her luck isn't great where her dad's health is concerned. And his bad health is enough to severely affect her life. Very sad. Very hard. Everything is different for us. Every situation is changed because MM is in the picture. And it's just something we have to deal with. For today, my husband and I are holding on to the fact that she is healthy. We know not every parent can say that about their kid right now. We are grateful. We are blessed. And we move forward.
Wednesday, March 11, 2015
8 years...............Life goes on
On March 8th, it was 8 years since Tim's MM diagnosis. Every year, from the 5th to the 8th, I re-live those hellish days when he was in intensive care and then diagnosed with MM. There are things that have happened these last 8 years that have been forgotten or dulled down in my memory, but those first days seemed to move in slow motion and the memories are vivid. I think in times of high emotion, that's how it works. It makes such an impact on your brain, it is burned in there forever. I am grateful for this time, but, as many of you know, I did not know 8 years ago that we would have it so our lives have been spent in month-long and then 3 month-long intervals of check-ups and prayers and holding our breath and exhaling. Tim turned 51 on Feb. 3rd. I turn the big 5-0 in August. Our lives are pretty much following the same pattern they have been. Tim works too hard and too many hours running his own business. I spend too many hours doing paperwork and things I don't want to do. We tick few to no things off our "bucket list". We taxi our kid all over the place and try to enjoy this time with her. She gets her driver's license in 2 months. As I've said before, I am petrified. Softball season just started and we have high hopes for a better season than the last 2. The last 2, she got stuck pitching with no back-up pitcher and no fielders to speak of behind her and a coach that had no clue how to coach softball. Her husband coaches the varsity team and takes everyone with talent with him, and left my kid to pitch with no help out there on the JV team. So, what do you do after being taken advantage of like that and having your arm blown out 2 years in a row? You stop being a pitcher and let him find someone else this year. So, it will be interesting to see what happens. Unfortunately, the younger kids coming into the program know what happened to Liv and several have refused to admit they can pitch because of it. Oh well, he is reaping what he sowed. I cannot believe that we are looking at colleges already. You think you are going to be doing this senior year but it all starts in junior year. I think that going away to college will be a good thing for Liv. She desperately needs to learn to take responsibility for herself. My many attempts to get her to do that have fallen flat. But, it will be VERY hard on Tim and myself, as I have said. I want to keep her somewhere not too far away. There are many reasons for this, but, Tim is reason #1. Anything can happen at any time. I don't want our kid a 7 hour drive from here if something does happen. We live in an area where there are very good colleges all over the place and there's just no reason she has to be states away from us. She does not even know what she wants to major in so it's not like she has to go to college XYZ in Arizona because they specialize in her field. So, we are touring colleges within a 2 hour radius and we'll see if we come up with something. I seem to have pulled out of a very long funk I was in. Oh, I still have my moments, but, I am trying to be hopeful. I have come to accept things about people that I didn't want to admit. It's kind of depressing but, there is a certain "letting go" when you just stop fighting with reality. It is what it is. I am not one to live in a dream world. I do not put rose colored glasses on and I prefer to deal with the truth and just get on with it. But, sometimes, there's just no safety net when you live like that and everything hits you in a "blunt force trauma" type of way. I understand now that there are people who just had no intention of riding this out with us. Sadly, we share DNA with those people and it was hard to wrap my brain around it for a long time, but, again, it is what it is. People make their choices. We learn to live with it. I read something on Facebook that said, "don't cross oceans for people who would not jump a puddle for you" and that's something I needed to get better at. I have a lot on my plate. I cannot fritter away time, energy and emotion on people who do nothing but suck the life out of everyone around them.
So, after this cold, snowy, dreary winter, I look forward to spring and am going to try to get out more. It hit 60 degrees today and I took my dog for her first walk at the park. We came back wet and muddy. Looks like New England is gonna have nuttin' on us for a mud season this year. The snow mounds were 6 feet tall in my yard just a few days ago from clearing the driveway. OY!
So, it's on to SPRING. Thank goodness. Enjoy!
So, after this cold, snowy, dreary winter, I look forward to spring and am going to try to get out more. It hit 60 degrees today and I took my dog for her first walk at the park. We came back wet and muddy. Looks like New England is gonna have nuttin' on us for a mud season this year. The snow mounds were 6 feet tall in my yard just a few days ago from clearing the driveway. OY!
So, it's on to SPRING. Thank goodness. Enjoy!
Friday, February 13, 2015
A day in the life.....looking back
A subject came up today that brought me back to a day just a few weeks after Tim's diagnosis. I have not been able to get it off my mind since. Tim was dx'ed with strep sepsis, a VERY dangerous illness, and spent about a week in the hospital, most of that in intensive care. This was what led to his MM diagnosis. After he came out, and we had our first devastating appointment with an MM specialist, he was put on what's called "pulse Dex". We were in the process of getting Revlimid squared away financially, but it was 40 mg. of dex, 4 days on, 4 days off, with other prophelactic meds to ward off infections (which didn't work, in this case). It is a brutal protocol and not used much now, as a clinical trial that broke just a month after this, in 2007, showed the mortality rate was much higher than lower dosing of Dex and that the lower dose still worked well enough. Tim was in the midst of this for the 1st month before his doctor lowered the dose, and suffering the side effects, when his nephew, Danny, (his Godson too) was making Eagle Scout and there was a ceremony and party for him. I did not want to go. For one thing, Tim woke up feeling horrible. For another, I was still dealing with unbearable grief over the diagnosis and unable to control the tears. Being in a crowd who all knew and would talk about it was too much for me. I felt like our family was just cleaved from the rest of society now, as we were living in this nightmare world, being sucked into a vortex of pain and fear. Everyone else was going on with their normal lives. Add to that, we were barely speaking to his sister-in-law, who is as toxic as they come, and this was just not a scene I wanted the 3 of us to be in right then. Tim was resolute, wanted to be there for Danny. So, we leave. Within 10 minutes or so of leaving our house, I am pulled over by a cop. I am ready to blow. I am so upset that Tim is making us go and now look, I am pulled over. I saw a cop taking radar on the other side of the highway at the bottom of a hill, which I think is just unfair as you can't help but pick up speed unless you ride the brakes. I flashed my lights up further to warn cars (OK so maybe this isn't right) and I guess the "pick-up" car saw me and pulled me over. I was not speeding, it just ticked him off to see me flash my headlights. He takes my paperwork and goes to check my license. Tim is in the passenger seat, feeling awful, and I am thinking, WE SHOULD NOT BE GOING TO THIS THING, THIS IS A SIGN. I do something I know you're not supposed to do, but I am thinking, we may lose everything, financially, and now my insurance might go up. I get out of my car and walk back to the cop. I say, "just so you know, my husband, who you saw in the passenger seat, was just diagnosed with cancer 2 weeks ago. Right now, it looks like we might lose our business and our house. So, if you still want to write me a ticket for flashing my lights, go ahead." I walk back to my car. He decides not to write me up, and I see him take a look at Tim as he hands me back my stuff. We go to the party. I am deep breathing all day trying not to cry. They show a picture show of Dan from the beginning of his boy scout career to the present time, and Tim and I are both crying, thinking that he will not be here to witness these milestones with Olivia and how effing unfair that is. Tim is feeling worse. Has the shakes. Says he wants to leave and go to his brother's house. I say, "please, let's go home" but he says "no. Maybe I'll feel better just relaxing back there". Mind you, his brother and sister-in-law would never go out of their way for anyone, certainly not our kid, but Tim and I try to do what's right in our heart, despite others doing awful things to us. This time though, I thought we were going too far and sacrificing too much. We go back to their house. He gets worse and worse but tries to hold out. I am upset. Finally, he agrees it's time to go. We make the 45 minute drive home. He looks so bad and is now feeling warm, so I stick a thermometer in his mouth. 103. Call the docs and, yup, we have to go to the ER. I have to call a neighbor and ask if Liv can come over and possibly stay the night. She says, "of course". My kid is starved, didn't eat any of the party food. I ask Julie if she could just please give her a bowl of cereal or something. But, this is the part that broke my heart. I try to calmly tell Liv that I have to bring daddy to the hospital. Her face collapses and the tears form. Within about 2 or 3 seconds, she stops herself, takes a deep breath and says, "NO, I have to be brave." I just wanted to die. She doesn't want to cry in front of our neighbors. She is trying to be strong for her daddy. 8 year old little girls are not supposed to be brave for adults. They are not supposed to have daddies with cancer who go to the hospital. They are not supposed to suck back their tears and tough it out. I was so incredibly sad I wanted to cry, but I am being strong for her, and Tim. I am so dang mad, I wanna punch someone. This scene flashed into my head today when I was talking to someone about being pulled over by cops. It's hard to recall days like that. It' even harder to know there might be worse ones coming. Living in the moment is the biggest challenge for someone like me. It's all at once impossible and necessary. So many worries creep in. But, so much joy can be robbed by letting them. So, we are still trying to make good memories for ourselves and Olivia. But, many times, I just wish there was a "delete" button on our brains where we can wipe out these heartbreaking ones. A little while ago, I thought to myself that, at least, Olivia probably has no memory of that day. I just wish I didn't either. For now, I am grateful for the fact that Tim has indeed seen many of those milestones we thought he would not see. And I sure hope he sees a heckuva lot more too.
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