So, Friday was it, Tim's first treatment since May 9th of 2008. Tim's Pet CT showed that there were a few tiny areas where the MM was beginning to be active in his bones, so, it was the right choice not to delay treatment any further. Actually, his main doctor thought he should have started a few months ago, but the other one convinced her to hold off. Women are always right........just sayin'. ;o) He got a Velcade shot in his tummy and 40 mg of Dex. It only took 22 hours from then to have our first dex-fueled argument. Joy, happy joy. AND, it was over me passing on a suggestion that someone else gave me about what she drinks that helps her with her treatments. I barely had the words out of my mouth and he snapped, "don't buy it. I"m not gonna like it." He can be rude sometimes with cutting me off, thinking he knows what I'm about to say and shooting down what he thinks that was. It gets old, quick. SO, this saying he doesn't even want to try something and biting my head off about it started an argument and I warned him that, Dex or no Dex, I'm not gonna put up with being treated like crap. Here I am trying to prepare for this new life on treatment and going out buying vitamins and massage lotions to try to make sure he doesn't get neuropathy, and he snaps at me like that. I see that maybe he is struggling with the loss of control over his life, and he reminded me that IT'S HIS LIFE, but, if he wakes up screaming with pain from neuropathy, it's not like me or Liv, if she happens to be home at the time, are going to be unscathed by that. His life directly affects mine and hers. If he gets bad neuropathy, there will be no working in his field again. His is NOT a desk job. Our kid will most likely have to leave the college she now loves. We might even lose our home and have to move into our 2-family.
SIGH So, how do you back off and do nothing when you know there might be a heavy price to pay for that? Darned if I know. But, I guess I will have to choose my battles here. Do something but try not overwhelm him with feeling like he is a patient and I am a caregiver again.
As always, I have to try, try, and try some more to live one day at a time. It's too overwhelming to try to figure out too much at once. I am just praying that 1. this treatment works WELL and 2. he doesn't get neuropathy or other side effects that force him to lower doses or change meds.
For now, I will get to today's list and try not to worry about tomorrow's list and worries.
Monday, February 13, 2017
Tuesday, February 7, 2017
GILT. spelled wrong on purpose because it should be a four-letter word
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.
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.
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!
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