Today I'm torn. I had a working interview yesterday. I think it went well and it's a job I could do pretty easily. I was told I would hear from them today or the next day. Today as I was waiting for the phone call, which I didn't get, I realized that I this opportunity is bitter sweet.
I really felt like I was laid off to have the opportunity to spend the ever shortening time with Aaron. We have now found ourselves in a position that in order to financially survive I have to get a job. The time I have let with Aaron seems so short to me. I am terrified to go to work and miss that precious time. Yes, I will still have evenings and weekends, but those 40 hours a week that I will now miss break my heart. I want to be the one who goes to doctor appointments with him. To sit next to him when test results come back. I want to be available to go do something when he has energy to get out of the house.
I don't understand God's plan in all this. I feel like I was laid off to be able to spend time with Aaron, only to have that ripped away in the last few months we have together. I have to admit, while I know I need a job and I could do this job and it would provide me with a paycheck, insurance and possibly Aaron with insurance in a few months, there's a part of me that doesn't want it. I would give all that up to have the time with Aaron. But, if I don't have a paycheck we will continue to add up bills we can't pay.
Maybe all of you who read this should pray that our Thanksgiving Lotto ticket is the winner. lol
We thought last Christmas would be Aaron's last, but now with the insurance ending in January and Aaron being on the last chance treatment, this will be the actual last Christmas. So things that used to be as simple as decorating the tree or having Aaron put on the tree topper seem so much more important. This is the last Thanksgiving day parade we'll watch, the last birthday I'll have with him, the last Springfield Christmas parade, the last New Years, our last anniversary, Aaron's last birthday, etc...
It's not fair that I have to leave my home and husband and miss things to have a job. Of course in this economy if I'm offered a job I'm going to take it. I would be absolutely crazy not to. But at the same time I'm going to have to try even harder to fake it. I'm going to have to put on the "happy mask" seems to be more and more difficult to find.
So tomorrow I will wait again for a phone call. I'm praying for God's will and I know he has a plan, but at the same time a part of me doesn't want it. And can you blame me?
Tuesday, November 23, 2010
Sunday, November 14, 2010
Yelling Marco, but no Polo to be found
Life is starting to get more difficult. Every day it gets more difficult to choose joy. Today was very difficult. I woke up and was very angry with the world and people. There are so many times when I feel alone in dealing with everything. I think because we talk so much about choosing joy people tend to think that we are stronger and dealing with things a lot easier than we actually are. Granted no one can actually know how I am feeling or the daily struggles I have unless they have lost a spouse to disease. Even then everyone's situation is different.Our family has been a good support and we do fave those few friends who are pretty consistent, but it's surprising and depressing how many people who you considered friends just seem to vanish. Maybe they're not sure how to talk to us. Maybe cancer is intimidating and they're afraid they will say something wrong. We are very open when it comes to talking about our situation.
One of my greatest fears in everything that's going on is that Aaron will die lonely. It kills me to see him wish one of his old friends would call, email, text, make some form of effort to see how he's doing. Like I said there are one or two people that we do see, but I know Aaron had more than two friends before his diagnosis. It makes me absolutely furious that Aaron has disappointed over and over again by "friends". So, if you were friends with him and know that you haven't talked to him in the last week or two, then get over yourself and pick up the phone. I know it might be difficult or awkward but it's not about you. I also know that time is limited and you may regret not spending time with an amazing man/friend when you no longer have the opportunity.
Tomorrow is going to be a difficult day. We are going to be going to Social Security hoping one more time to get more information to get to the COBRA administrator in hopes of finding some way to get insurance to go past January. Depending on how that goes, we have to figure out how we will make the monthly payments of $410. We will also be making our first visit Hospice to get information. One of the main concerns, again, is cost. We will hopefully find out if there are grants or options for us where services would be free, because most likely services would be needed after insurance had ended. If we can't get insurance to be extended beyond January then we face the issue of changing some of Aaron's medications because not all of them come in a generic or the generic is not available on the discount list at the pharmacy. Without insurance there is a possibility that meds alone could cost close to $400. Then there's the worry of what happens if there is an emergency and Aaron has to go to the hospital?
So on a daily basis we get up and not only do we have to take on the fact that Aaron is dieing, but we wonder what the physical pain level will be that day, we constantly think about insurance being cancelled, cost of treatment, doctor visits, cost of medication, whatever appointments there is that day, wonder will anybody besides parents call (or do they even care?) plus whatever else may be going on in each of our lives that day. Not only should no one our age have to worry about all this, it's too much for one person to worry about.
So, next time Aaron or I pop into your head, rather than thinking, "I wonder how they are doing?" pick up the phone and find out. The financial support we have received from some of you has been a life saver, but we also need emotional support, encouragement and to know that someone does care and a reminder that there are still friends out there.
People have said many times, " we're hear for you, just let us know what we can do" or "let us know if you need anything". Well there you go. I can't lay it out any more clear that that.
One of my greatest fears in everything that's going on is that Aaron will die lonely. It kills me to see him wish one of his old friends would call, email, text, make some form of effort to see how he's doing. Like I said there are one or two people that we do see, but I know Aaron had more than two friends before his diagnosis. It makes me absolutely furious that Aaron has disappointed over and over again by "friends". So, if you were friends with him and know that you haven't talked to him in the last week or two, then get over yourself and pick up the phone. I know it might be difficult or awkward but it's not about you. I also know that time is limited and you may regret not spending time with an amazing man/friend when you no longer have the opportunity.
Tomorrow is going to be a difficult day. We are going to be going to Social Security hoping one more time to get more information to get to the COBRA administrator in hopes of finding some way to get insurance to go past January. Depending on how that goes, we have to figure out how we will make the monthly payments of $410. We will also be making our first visit Hospice to get information. One of the main concerns, again, is cost. We will hopefully find out if there are grants or options for us where services would be free, because most likely services would be needed after insurance had ended. If we can't get insurance to be extended beyond January then we face the issue of changing some of Aaron's medications because not all of them come in a generic or the generic is not available on the discount list at the pharmacy. Without insurance there is a possibility that meds alone could cost close to $400. Then there's the worry of what happens if there is an emergency and Aaron has to go to the hospital?
So on a daily basis we get up and not only do we have to take on the fact that Aaron is dieing, but we wonder what the physical pain level will be that day, we constantly think about insurance being cancelled, cost of treatment, doctor visits, cost of medication, whatever appointments there is that day, wonder will anybody besides parents call (or do they even care?) plus whatever else may be going on in each of our lives that day. Not only should no one our age have to worry about all this, it's too much for one person to worry about.
So, next time Aaron or I pop into your head, rather than thinking, "I wonder how they are doing?" pick up the phone and find out. The financial support we have received from some of you has been a life saver, but we also need emotional support, encouragement and to know that someone does care and a reminder that there are still friends out there.
People have said many times, " we're hear for you, just let us know what we can do" or "let us know if you need anything". Well there you go. I can't lay it out any more clear that that.
Thursday, November 4, 2010
Diet, debt, disapointment and death
This is my second week on weight watchers. I hadn't wanted to start a "diet" with all the other stress that has been going on. I am a stress eater. Nothing gives the illusion of halting a problem for me better than hostess products or fried food. I'm not proud to admit that. It's pretty embarrassing. I finally got to the point one night when I felt like I couldn't breath well and all I was doing was sitting on the couch. It was time to start something. I've done slim fast many times and Herba-life, tried one or two pills, natural acai diet pills, nothing works long term. I have felt so overwhelmed by things as simple as a sink full of dishes, or laundry in the corner of our room that the thought of working out just made me shut down completely. It's just so easy to say screw it all when you're depressed and go to bed or sit on the couch all day.
Last week was hard to start. I was given 34 points a day with a weekly bonus of 35 points to use whenever. On Monday I used all of my daily points and almost half of my weekly points. The rest of the week was a bit easier. I have found that I really enjoy using my wii fit. I've also had to overcome the fear of working out in front of people. I know Aaron loves me and my body just the way I am, but I have never been comfortable working out in the house in front of him. Just self insecurities. But working out with a video game has made things fun and I'm able to laugh at myself if I screw up.
The last two days I have found myself wanting to work out out of boredom. This morning the sun was out and there was a cool breeze so I put Belle's leash on her and we went for a walk. She's quite the pansy when things are new and the falling leaves freaked her out a bit so after once around the block I dropped her off and went another round. In total I did 1.4 miles. Which is good for me. I've always wanted to be the kind of person that could go for a run. There are times when I've been upset or angry and I just think, "I wish I could go for a run". I know it's going to be a long time till I"m at the point that I can go out and run. I have to work up to that. I'm pretty sure if I did that now I'd feel like I was going to die or my lungs were going to explode after about a block. I'll get there.
This last week we finally did the thing no one likes to do. We wrote down all our monthly expenses and added them up. Then added up my unemployment and Aaron's disability and realized that on a monthly basis we were $210 short. That does not consider the cost of food and gas. We discussed our options and came to the conclusion that in order to cover everything we needed to there was a possibility that we would have to drop his COBRA insurance which is $410 a month. Knowing his insurance was going to end in December we had just been working on getting paperwork and documentation about his disability into the COBRA administrator in order to get the 11 month extension that they have to give by law. We started to pray for a clear answer of what we should do. The options were, I get a full time job (which I've been looking for for 8 weeks now), Aaron get a part time job (which I was not a fan of), or we drop his insurance (also not a fan of and being the last option as he would also have to stop treatment).
Today we got notification from the COBRA administrator that somewhere in the fine print of all the paperwork we got when Aaron started COBRA, it stated that if he went on disability they had to be notified within 60 days of that decision. This was the first we had heard of this. Therefor Aaron does not qualify for the 11 month extension, meaning his insurance will end at the end of December. So as we stand now, he will have to stop treatment in December as well. This breaks my heart. Although we got the clear answer we were praying for.
We will continue to look at any possible options. We have been denied Oregon health Plan insurance twice because, believe it or not, with my unemployment and his disability we make too much. We will be trying this option once more time maybe with help from the cancer center to get coverage. Willamette Valley Cancer Institute is also trying to find grants or foundations to help pay for things, meds, Dr visits, treatment, etc. Many people have brought up medicare/medicaid. There is a manditory waiting period of two years from your first disability check before you qualify unless you have kidney failure. So, Aaron doesn't qualify for that for another year. Just paying for treatment or doing a payment plan with the Dr.'s office is not an option as treatment every other week is around $16,000.
So, the decision that was made for us has caused many feelings. Relief that we don't have to make the decision to stop insurance due to money, but deep sadness at the realization that things are indeed getting closer to the end. I don't know how long Aaron will have after he stops treatment. While the meds weren't getting rid of any cancer, they were holding back the growth. Aaron will have an MRI next Wednesday to find out where things are at and if anything has grown or gone away. I guess that will give us a closer estimate of time.
One thing I know is true, is God has a plan. I may not know what it is, but I trust it and have faith that it is for our good and not to harm us. One thing I hope, is that with the money we would have been spending on insurance, we can take one last trip or just do some things local that we haven't been able to do. I want whatever time we have left to be enjoyable and make memories. Not scrounging to figure out how to make rent, or going through movies to see what we can sell to get gas money.
Thank you to all of you who have helped us financially as well as with prayers. We really do appreciate it. Although we may feel some faint relief in a while, I'm afraid things are going to continue to get harder.
Last week was hard to start. I was given 34 points a day with a weekly bonus of 35 points to use whenever. On Monday I used all of my daily points and almost half of my weekly points. The rest of the week was a bit easier. I have found that I really enjoy using my wii fit. I've also had to overcome the fear of working out in front of people. I know Aaron loves me and my body just the way I am, but I have never been comfortable working out in the house in front of him. Just self insecurities. But working out with a video game has made things fun and I'm able to laugh at myself if I screw up.
The last two days I have found myself wanting to work out out of boredom. This morning the sun was out and there was a cool breeze so I put Belle's leash on her and we went for a walk. She's quite the pansy when things are new and the falling leaves freaked her out a bit so after once around the block I dropped her off and went another round. In total I did 1.4 miles. Which is good for me. I've always wanted to be the kind of person that could go for a run. There are times when I've been upset or angry and I just think, "I wish I could go for a run". I know it's going to be a long time till I"m at the point that I can go out and run. I have to work up to that. I'm pretty sure if I did that now I'd feel like I was going to die or my lungs were going to explode after about a block. I'll get there.
This last week we finally did the thing no one likes to do. We wrote down all our monthly expenses and added them up. Then added up my unemployment and Aaron's disability and realized that on a monthly basis we were $210 short. That does not consider the cost of food and gas. We discussed our options and came to the conclusion that in order to cover everything we needed to there was a possibility that we would have to drop his COBRA insurance which is $410 a month. Knowing his insurance was going to end in December we had just been working on getting paperwork and documentation about his disability into the COBRA administrator in order to get the 11 month extension that they have to give by law. We started to pray for a clear answer of what we should do. The options were, I get a full time job (which I've been looking for for 8 weeks now), Aaron get a part time job (which I was not a fan of), or we drop his insurance (also not a fan of and being the last option as he would also have to stop treatment).
Today we got notification from the COBRA administrator that somewhere in the fine print of all the paperwork we got when Aaron started COBRA, it stated that if he went on disability they had to be notified within 60 days of that decision. This was the first we had heard of this. Therefor Aaron does not qualify for the 11 month extension, meaning his insurance will end at the end of December. So as we stand now, he will have to stop treatment in December as well. This breaks my heart. Although we got the clear answer we were praying for.
We will continue to look at any possible options. We have been denied Oregon health Plan insurance twice because, believe it or not, with my unemployment and his disability we make too much. We will be trying this option once more time maybe with help from the cancer center to get coverage. Willamette Valley Cancer Institute is also trying to find grants or foundations to help pay for things, meds, Dr visits, treatment, etc. Many people have brought up medicare/medicaid. There is a manditory waiting period of two years from your first disability check before you qualify unless you have kidney failure. So, Aaron doesn't qualify for that for another year. Just paying for treatment or doing a payment plan with the Dr.'s office is not an option as treatment every other week is around $16,000.
So, the decision that was made for us has caused many feelings. Relief that we don't have to make the decision to stop insurance due to money, but deep sadness at the realization that things are indeed getting closer to the end. I don't know how long Aaron will have after he stops treatment. While the meds weren't getting rid of any cancer, they were holding back the growth. Aaron will have an MRI next Wednesday to find out where things are at and if anything has grown or gone away. I guess that will give us a closer estimate of time.
One thing I know is true, is God has a plan. I may not know what it is, but I trust it and have faith that it is for our good and not to harm us. One thing I hope, is that with the money we would have been spending on insurance, we can take one last trip or just do some things local that we haven't been able to do. I want whatever time we have left to be enjoyable and make memories. Not scrounging to figure out how to make rent, or going through movies to see what we can sell to get gas money.
Thank you to all of you who have helped us financially as well as with prayers. We really do appreciate it. Although we may feel some faint relief in a while, I'm afraid things are going to continue to get harder.
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