Facing anxiety while finding the elusive joy

I don't know where to start. I've had a rough couple weeks, with good times mixed in of course.
Almost all of you knew that I was laid off from my job in August and know that I finally found another job right before Thanksgiving. I had to quit that job after 4 1/2 days of work due to my anxiety.

Most of you don't know that anxiety and depression is something I deal with on a daily basis. Aaron and I work very hard to choose joy, and while we promote that to everyone it's easier said than done some days. I have dealt with anxiety for several years. For my last year of work at the dental office I would have a panic attack before work at least three times a month. Some days this actually prevented me from being able to go to work. Part of the reason I left that job for the vets office was because I thought maybe it was the environment that was too stressful for me. I did better for several months once I got the new job, then it started again. By this time Aaron had been diagnosed with cancer. There were days when I called in because Aaron was sick or we had been at the ER all night, but there were many days when I had to call in because I was depressed or having a panic attack and just couldn't make myself go to work that day. My absences started to come up in my reviews but due to Aaron's illness they were very understanding. It finally came to the point where due to the economy they had to let someone go from the office and it came down to the fact that even though I wasn't the newest employee, I had the most absences and it wasn't getting better. So I got laid off.

When I started looking for work the thought of going back to a job was such a daunting idea. When I got the call that I was offered a job after two interviews I actually freaked out and cried for 1/2 an hour before I had to put on my brave face and to into work that afternoon. I did not want that job. The only reason I was applying for jobs in the first place was because unemployment required it. If there had been a logical reason for me to NOT take the job I would have turned it down. I felt trapped. I knew I couldn't do the job but if I turned it down I would loose my unemployment and we couldn't pay bills without it. So I went to work. And I came home and cried. Luckily it was Thanksgiving weekend and I only had to work one day before I had a long weekend. So Monday I got up and pushed down my anxiety and went to work, then came home and cried again cause I didn't want to go back. The next day was the same. Wednesday morning was even more difficult. I went in and decided I needed to talk to my supervisor. I had taken some time off the day before for a doctors appointment where we got some upsetting news so she said it would be ok if I needed to go home for the day. A few hours later I called and quit. I just could not go back.

The next day I went to my doctor and my anti-depressant medication dose was upped as well as adding Xanex for those times where my anxiety was more than I could handle.

There are days now where the idea of doing anything is more than I can handle. There are so many things that need to be done that finding a starting point seems beyond me. A few people have been a great help. Aaron's parents have been a great help with regular house chores as well as one of our friends helping me clean. There are so many packages of paperwork that have to be done to file for the assistance we are trying to get, be it my SSD, Bridge assistance, OHP, food stamps, Volunteers in Medicine, Rx Assistance, etc. Unfortunately these are all things that not really anyone else can help us do. It feels overwhelming. This week I have had to take a Xanex almost every day and today is the first day I haven't taken at least a 2 hour nap to escape.

I have filed for Disability. I'm hoping to be approved but most people aren't on their first try and have to appeal.

So right now we are living off Aaron's social security, which doesn't pay all the bills. So that's another thing for me to be anxious about. Because I am unable to suck it up and work, we aren't able to do things. There have been days where I have thought it would be easier if I just took a handful of Aaron's meds and be done with it. I won't. Please don't email me and tell me all the reasons why I shouldn't. I think suicide is a very selfish way out and I would never do that to my family. That and I"m a big chicken.

OK, downer stuff out of the way, Aaron has had some great exposure over the bracelets. IT all started when a friend posted a picture of their Christmas house elf wearing Aaron's "Cancer sucks...Life is good...Choose joy" bracelet. My mom then put the idea out there that other people should send pictures. So Aaron started asking for pics of his bracelets with inanimate objects. I think at this point he has 40 something pics.

After people started sending in pics gawker.com posted an update with the info about the pictures. From them a Canadian primetime TV show saw the story and wanted to do an interview. So we drove to Portland for Aaron to do a satellite interview with them to air live in Canada. While we were in the portland studio they decided to interview him and run an update story since they had done one when he was selling add space on the urns. We received over 140 orders for bracelets between the website and the interviews that aired. Needless to say I'm still stuffing envelopes to mail.

It makes me happy that with all the crap that goes on in the world, people really seem to accept and take on the Choose Joy mantra for their lives. I know it means alot to Aaron to have his bracelets out there.

I had a great surprise on Christmas eve night. We had been decorating cookies that day with his parents and I made up a plate to take to the neighbors that moved into the other side of our duplex about 2 weeks ago. I took them to the door and rang the bell. One of the girls answered and the other came to the door shortly after. She was holding a glass and I thought I saw something purple on her wrist. I asked to see her bracelet and it was one of Aaron's choose joy bracelet. It caught me off guard and I asked where she got it. She said one of the nurses gave it to her at her chemo appointment. That was so awesome to me. It was such a small world.

I've decided that I want to keep the bracelet thing going after Aaron's gone. I asked Aaron to register choosejoy.com for me but it was already taken by a motivational speaker group so we now have choosejoy.org. There's nothing there yet but we own the name. I hope to have Aaron's story on there as well as a place to purchase the bracelets and maybe shirts or other choose joy things. I want Aaron's legacy to go on and to know that all the things we did and talk about choosing joy that he promoted was not in vein. There's nothing I can do about the situation he's facing right now, but I can carry on the good things later.

I"m pretty sure if you are reading this you already read Aaron's blog, but you can buy bracelets at www.judasforgiven.com.

My new challenge ( in all of my free time) is trying to find a way to make it possible for Aaron to visit out friend David in California one more time. Right now we expect that he may have a short window of opportunity to travel in the beginning of January before he starts to get too weak or there is some miraculous funding to restart chemo. We have found train tickets for about $500 round trip for both of us. Which isn't too bad, but it's more than we have. So, if you have any extra and can help me make this happen it would be awesome. There's a Paypal donation button to the right at the top of the page. If 25 people donated $20 it would make this trip happen for us.

Thank you to those of you who read my blog. I don't know that there are many, maybe not even the 25, but it's nice to know that people care. I promise I"ll try to write another one sooner than a month out this time.

Broken and broke

Today I lost it. I think it really started yesterday. As many of you know I started a job that was much needed on Wednesday of last week. I knew it was going to be difficult to do when I cried for a few hour,s after getting the call with the job offer, trying to figure out what I could do to possibly not have to take the job. But I knew I needed to buck up and go to work.

I was able to do that Wednesday afternoon and after the weekend did it again Monday morning. Tuesday morning I found that I was dealing with some anxiety but I just figured it was cause Aaron had an appointment to find out the results of his last MRI. I worked the morning then went to the appointment with him where we were told the cancer wasn't responding to the current treatment anymore and there was a new growth on the liver. So they are taking him off the current treatment and going to a combination of two drugs he's been on previously but trying them in different methods of delivery to see if it will respond to that.

I went back to work after that but found it very difficult to keep composed. At least I was able to fake it for the last 3 hours I had to work. At this point, my third day at work, I still hadn't been told for sure if the job was full or part time, what my exact pay per hour was or when pay days were. AND I had two supervisors watching over me and giving me "projects", like helping them rewrite the training manual while training from it, as well as another person who was training me. On my second day I was checking out patients, scheduling appointments and taking payments and being expected to calculate insurance and patient portions for services since everything has to be prepaid. In what universe is that logical expectations for a new employee.

Yesterday when I came home from work I cried for 1/2 an hour knowing I would have to go back. All this time knowing that time with Aaron is once again shorter.

This morning I got up and got ready for work. I could feel the anxiety building up as I showered and got dressed. It was all I could do to just make myself go out the door. I cried on and off on the way to work. Got in, sat down at my desk and lost it. I tried as hard as I could to compose myself but nothing was working. Then I got a page at my desk that a patient on the phone needed to schedule treatment. I instantly panicked. My supervisor took the call when she came back and saw me crying. My "trainer" was on the other line with a patient. I had no idea what to do. When she got off the phone I asked her if she had time to talk before it got busy but she said not till 9 to I'd have to wait almost 45 minutes. In the mean time I found easy, busy work that involved lots of papers but not a lot of knowledge so assistants and hygienists bringing up patients would think I was busy.

She finally came down and got me to go upstairs and talk. I broke down and told her that I felt like too much was being expected of me too soon and I was overwhelmed. I also told her what we had found out at the Dr. appointment the day before. She seemed very understanding. She also finally confirmed that the position was full time. But still didn't clarify what I was making per hour. She asked if I was going to be able to finish the day or if I needed to go. I said I was going to stay but needed to calm down a bit. After sitting in her office for a few minutes I still couldn't compose myself so I decided I needed to leave.

I cried most of the way home and for quite a while after I got home. That job was what we needed for Aaron to have insurance after December and I couldn't do it. Of course I'm the only one in the family putting any pressure on myself about the insurance.

So I made the decision that with everything else going on and all the stress we have already, I am just not mentally or emotionally able to work. So I called my supervisor and told her I would not be returning to work.

December 16th I have an appointment with social security I have an appointment to discuss disability due to mental situation and anxiety.

I have no idea what we will do for income. Aaron still gets his disability but that won't cover things. I feel like I really shot us in the foot on top of an already difficult situation, but I also feel like this was my only option. I can't live a life of panic attacks and trying to bury tears and emotions.

Please pray for us and our new even more questionable financial situation. I know it's Christmas and every one is tight right now but if you have anything extra we would appreciate it. There is a donation button on the right. Thanks for caring enough to read this.

Daylight come and I wanna be home

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?

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.

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.

Who wants to be a millionaire?

I'm angry. I wish I wasn't but at the moment I am.

This morning started out ok, but went down hill quick for me. Church was great. At one point the our pastor started talking about the false security of money. The lie that if we only had money things would be ok and that our true security is in God. He was telling us of a man who was very wealthy and would make around 45 million this year but wasn't happy with his life and wanted what someone else had even though they didn't have the money. Instead of following the point our pastor was telling us, I instantly got angry and all I could think of is this man who had a ton of money and didn't want it, yet while I don't have the need to be rich, I would like to be able to pay rent, bills and maybe give some experiences to Aaron before he dies that we can in no way even afford to dream about. The thought that 1/100 of someone's yearly pay could pay off our car, pay our rent for over a year, more than cover all of the bills people are calling us to pay and give Aaron the opportunity to take a trip or do something he won't be able to do now blows my mind. The fact that someone that doesn't want or need the money has it is what makes me mad.

Right now I would love for Aaron to be able to make one more trip down to southern California to see his friend David. I would love to see David as well. Aaron is unable to sit in a car for that length of time anymore and we can't afford to fly. So therefor something as simple as a trip to a state right next to us is no longer an option due to something as stupid as money. It makes me so mad that money dictates how we live.

I don't want to be rich or wealthy. I'd be content with knowing where the money for rent is coming more than a day before it was due. I can tell you if I had the blessing of being wealthy I would use it to help people that didn't have that luxury.

God has supplied for our needs very faithfully. I am grateful for that. I just wish, that in the little and precious time Aaron and I have together, that we had money to do things that Aaron wanted to do and experience rather than sit at home trying to figure out how to pay bills.

So if you happen to have an extra $45,000 or know someone who does, give them our number. lol

I know. "Everyone would like to do things" and "not everyone gets to do things they want", However, it still sucks.

Headaches and Halo

The title of the blog comes from the fact that I'm typing this with a terrible headache. It's been pretty constant for the last few days. It's ok in the morning then by late afternoon it shows up. My guess is stress.
The other part of the title comes from a good thing. Many of you know Aaron went down to California with his mom to say good bye to his grandma. While there his cousins were getting rid of their original x-box so Aaron came home with it and several games. One game is Halo. He loves this game, and I enjoy watching him play. Occasionally I get to help him figure out how to get out of a situation, but most of the time when he's playing I'm on the internet and can't figure out how he got there to begin with. lol
This week has had emotional ups and downs for me. I've had a hard time getting motivated in the mornings. Monday our friend Michelle came over to help me get the house back under control. We got alot done in 2 hours. Bathroom cleaned, kitchen done, everything dusted and vacuumed, including under the couch. It felt so good. Then that afternoon I got a massage. The lady I go to has lost her husband to cancer and gives discounts to cancer patient's and caregivers. She is so generous and knows that massage is a big help and relief of stress.
Yesterday, Tuesday, We were supposed to get a foster dog. We would love for Belle to have someone to play with and be a companion when we are worn out. We can't, afford to have a second dog. By fostering you get to have the enjoyment of having a dog in your house while it is between permanent homes while having the rescue pay for things. It's a win win for everyone involved. We were working with a lady from Save the Pets here in Eugene. They have dogs brought up here from high kill shelters in California. The dog that they had planned to be in our house ended up not being a good fit for Belle and our house so we will be looking at different dogs to be in our house till adopted.
I've been working on alot of necklaces this week and have put them up on my website. www.joyofglass.us. You should check it out and spread the work. I've had a few sales but not what I was hoping for. Thank you to the person who has been placing the majority of the orders. You are single handedly paying for some of our bills and we truly appreciate it.

Caring for the caregiver

Just tonight I found a website directed at people who are caregivers. I love Aaron more than I can ever say and honestly would have a hard time turning care for him over to anyone else because, of course, no one can take care of him like I can.
On the website, www.strengthforcaring.com, I found a description of caregivers that I found to apply to me more than I would like.

CANCER CAREGIVERS

A study from the Journal of Family Nursing (JFN, November, 1998 Vol.4, Issue 4) provides a glimpse into the life of a cancer caregiver. This study examined caregiver characteristics and needs through a questionnaire administered to 750 cancer caregivers who participated in the University of Pennsylvania Family Caregiver Cancer Education Program.

Who Are the Caregivers

Are you taking care of a loved one with cancer? You are not alone. More than 1.3 million cases of cancer are diagnosed each year. Studies suggest that at least 50 percent of those diagnosed with cancer will be cared for by someone in their immediate family.

Who are the cancer caregivers?

• 82 percent are female
• 71 percent are married
• 61 percent have been providing care for less than six months
• 54 percent live with the patient for whom they are caring
• 47 percent are more than 50 years old
• 36 percent reported caregiving took more than 40 hours of time per week

A Day in the Life of a Cancer Caregiver

What don’t you do? As a cancer caregiver, you spend your days preparing meals, cleaning, providing transportation, talking to health care providers, administering medication, and making sure their loved one gets everything they need. Cancer caregivers find the time to do it all…everything but take care of themselves.

Consequences of Cancer Caregiving

The Journal of Family Nursing study detailed the impact of providing care on cancer caregivers’ physical, emotional, and financial health. The results are staggering, and indicate that the caregiver needs to take care of his or herself.

Physical

• 70 percent reported taking between 1 and 10 medications per day
• 62 percent said their own health had suffered as a result of caregiving
• 25 percent reported having significant physical limitations of their own

Emotional

• 85 percent reported that they resented having to provide care
• 70 percent said their families were not working well together
• 54 percent visited friends and family less since assuming their caregiving role
• 35 percent said they were overwhelmed by their caregiving role
• 97 percent said their roles were important
• 81 percent stated that they wanted to provide care and could not live with themselves if they did not assume caregiving responsibilities

Financial

• 46 percent reported inadequate financial resources
• Caregivers frequently missed as many workdays as those patients for whom they were caring, according to a survey conducted by the Fatigue Coalition (a multidisciplinary group of medical practitioners, researchers and Patient advocates), and funded by Ortho Biotech Products, L.P.

Not many of you who read this know exactly what our reality is like. We can try to go along with "normal" life but no matter what we do, at some point or points in the day, we will think about how long or how little we have left, what we'd like to accomplish in that time, what prescriptions need to be refilled for the week, what side effects are worse this week, what side effects or pains are new that day, as well as come up with dinner, do laundry or dishes and any other thing that may come along that day. I'm not necessarily complaining as just putting the facts out there.
I guess I say all this because someone made a comment about, now that I'm not working I should have a lot more time to get things done. I know it was not meant in any sort of harmful way and was probably meant to point out that I have one less thing to think about and shouldn't be as stressed. The reality is I discovered that people really don't know how our life is and while, yes, I don't have to go to work anymore, that has been replaced by trying to find a job that will take on a new employee knowing they will need time off as well as come up with money for bills that were payed with my now nonexistent paycheck.
I hope those of you who read this post see it informational and not as pointing fingers.
Nothing is harder than caring for the one you love knowing that no matter what you do they are still going to die.

Sadness

I feel like I should blog but I'm not sure exactly what to write. I'm sad today. No specific reason that I can pin point. Just am. Today was the first time in two weeks that I had time at home without Aaron. He was out for a few hours to get some things done for the show tomorrow night. (Cosmic Pizza, 7:30 Aaron's opening for The Lost Dogs. $10 per person or $30 for a family) I got some dishes done, cleaned up most of the living room and vacuumed. Then for some reason sadness hit me. I love having time with Aaron. In a way it was great timing for me to get laid off. On the other hand it's very overwhelming to be a caregiver 24 hours a day. I wouldn't have it any other way. I want to be the one making sure Aaron's taken care of like he should be, but it is hard to not have any ME time. I know that all I would have to do is say the word and I could go do what ever I wanted, get out of the house, go for a walk, go do glass work... But I guess I feel like I need to be here. I've put myself in this position. Aaron never makes me feel like I have to take care of him.
The other night when Aaron was rehearsing he was using a guitar that was given to him. He sold what I consider still to be HIS guitar a while back to pay bills. It was one that he actually picked out and purchased, not one that happen to be available when he needed one or one that someone gave to him as a loaner. This was one that he looked for and chose himself. Even though we sold it we've been storing it unused for the person who bought it. Well, that night I realized that I wanted that guitar when he is gone. It's the guitar that I see as HIS and realized just how much it meant to me. After realizing this I contacted the person who bought it and explained the situation. They graciously said I could have it. I didn't even need to pay them back for it. I was/am so grateful. SO now not only does Aaron get to fill a bucket wish item of opening for The Lost Dogs, he gets to play HIS guitar.
Tomorrow morning we get the results from his MRI last week. This is bitter sweet. I'm kinda scared. What ever the results I know we'll make a decision together and will go through it together.
I put a resume in at the Cancer center that Aaron goes to this week. I felt like I needed to do that. But I'm torn on working. I don't want to regret not having time with Aaron because I had to go to work. But we also need to pay bills. I will be getting unemployment. This month will be tight. I filed too late(Monday morning) my first week off work for that to qualify as my waiting week. So this week is actually my waiting week, which means that I won't get a check till next week. So if you want to help out at all and get some Christmas shopping done, check out my website. www.joyofglass.us. There's fused glass pendants and necklaces on there right now and I will be putting some Oregon Duck colored pendants and earrings soon. Check 'em out!

The Joy of Glass

Sitting in the chemo room with Aaron while he gets injected with poisons. Platelets were low today so he's only getting 1/2 the medication. Our friend Bob stopped by to say hi before Aaron went in to the Benedryl sleep. Right now I'm glad I was layed off. The whole no paycheck thing sucks but I'm getting unemployment and I get to spend the time with Aaron which is more important to me. It's also less stressful for me since I'm not exhausted with a list of things that still need to be done after getting home at 6 or 6:30. I'm torn between wanting to look for a job because I feel like I need to be working since I always have. BUT every time I think about looking I start to have anxiety about not being with Aaron. I feel like time is so precious right now.
We checked into me getting payed to be Aaron's care giver but he has to be receiving Medicaid for that to happen, but there's a another year wait before he qualifies to get on it. Man the system is screwed up. We will be submitting paperwork to see if we finally qualify for government assistance. We've always fallen into the category of make too much to qualify but don't make enough to get what we need. Plus I'll need some type of insurance for my prescriptions. I've never been one who was willing to or wanted to "live off the government" but I kinda feel at this point that I've payed into it for about 10 years now and 6 or 7 months isn't going to drain the system. Plus I'll never actually get to collect the social security I've paid into either. So I'll take that now please Uncle Sam.
Last week I went to do glass fusing. It's both a method of stress relief and hopefully a way to bring in some extra money. I set up a shop on Etsy.com and Aaron registered the name joyofglass.us for me. I'm really hoping this takes off and I'm able to do jewelry and glass work enough to have an income.
Thanks to some friends who let have the use of they're beach house we were able to get away to Lincoln City this last weekend. It was beautiful weather. I walked from the house down to the beach at one point to see the tide pools. This consisted of walking up and down two fairly steep hills and down 125 stairs to reach the beach where I then walked out a ways to get to the tide pools. Of course this was followed by the return trip UP 125 stairs and up and down the same two steep hills to get back. I claim brief insanity for thinking this was a good idea. The tide pools were beautiful. I was able to see so many star fish and sea anemones, which I have never seen outside the aquarium. There were huge rocks covered in muscles and barnacles as well. So amazing. Of course it's three days later and I still can't flex my calf muscles without wincing. I guess I can claim that as equivalent to three days on the wii fit.
So the rest of this week I plan on working around the house and making jewelry to put on the website. I'm excited about the new beads I got at a shop on the coast. Please tell your friends about my jewelry and new website www.joyofglass.us. I'd love to have to make more to replace what's sold.

Playing pin the plan on my life

Well, This has been an interesting week. It started to get difficult Tuesday night when Aaron went into the ER for difficulty breathing. They did EKGs, blood work and an MRI and found nothing out of the ordinary. So at 3am we went back home. I went to work the next day with a decent amount of coffee to make it. That night after I got home from work the breathing issue started to get worse so we went back to the ER. This time they did more blood work, another EKG and a chest x-ray still showing nothing. So again back home around midnight and up and off to work the next morning. Thursday night Aaron and I went to bed around 7:30pm to try and catch up on sleep. He woke up about an hour later crying. This week has been very difficult for him. He's mourning his own life it seems. No one should ever have to do that. I layed in bed as he sat on the edge crying. I felt so helpless. There are no words to say that feel like you can help someone who is facing death, but doesn't want to die. There's also the other side of that in chemo is so rough he's not sure how much longer he can go through it. All I can say is that I support his decision and understand that he needs to do what he has to. Of course I want his to be around longer but I don't want him to be miserable. It's a difficult decision to make.
We've started getting phone calls from Dr's we owe money to. That's always fun. I just want to tell them, "here's a deal, if you find the money I'll pay it to you". I did contact Sacred Heart to apply for their Bridge program which is like a hardship application. So we will fill that out and see where it goes. I also Called Curry General Hospital, in Gold Beach Oregon, which is where we had to stop for me on the way down to Cali. in June. Because we don't live in the area we don't qualify for any sort of financial assistance through them. So the full $900 is our portion. Good times.
On the way home from the ER the second night our check Engine light came on in the new car. Awesome. We're taking it into the dealer tomorrow to have it looked at. Praying it's something simple and cheep(or free).
So here's the icing on the cake for the week. At about 3:30 today (Friday) I got asked to go back to the office where our office manager was. I joked before leaving the front desk that I must be safe to go cause it wasn't the "end of the day yet". Well I was wrong. I got back to the office and she was sitting at the desk with my employee file. She started to explain that we hadn't been bringing in enough money as a clinic and they were going to have to cut a full time position. Due to the amount of absences I'd had, in spite of the fact that it was because my husband has F@&#ing CANCER!!, I was the one they were letting go. They did say if things picked back up and they were needing another full time person again they would want me back. Of course with the fact that I am the only income besides Social Security, I can't exactly wait for that to happen. So tonight we went out on the double date we had been planning with friends. One last night of fun, and of course I nice stiff drink, played some Mario Kart, watched some Greg the Bunny and now off to bed soon.
Tomorrow We will get up, take the car in, see a friend we haven't seen in a long time, Sunday church and Monday go to unemployment, social services to see about food stamps and look for work.
God has a plan in all of this. I DO sill believe this. I just feel like I'm wearing a blindfold and being spun in circles right now. I don't know when I'll stop spinning and hear the word "go" but I"m starting to get nauseous.

1 Peter 4:13
^12-13Friends, when life gets really difficult, don't jump to the conclusion that God isn't on the job. Instead, be glad that you are in the very thick of what Christ experienced. This is a spiritual refining process, with glory just around the corner. - The Message

Living in a game of Whack-a-mole

Right now that's what life feels like. You finally get up for air only to be hit in the head by a giant mallet that knocks you right back into your hole. It felt like things were going ok for a week or so. Aaron's chemo is harder on him and he has tougher side effects, but things seemed to be tolerable. There just seems to be one thing after another that smacks us in the head.
Relay for Life was this last weekend at Thurston High school. This is a great event to raise awareness and money for cancer and research. We had a fun team, but missed those who didn't/couldn't come. Aaron had chemo the morning of and went straight to Relay after. He was able to walk the survivor lap, but due to how the meds act in the heat didn't do any other walking. Our team captain Sonja was amazing. She took an 8 hour shift over night when we didn't have anyone to walk and ended up doing 27 miles total. I got in 7 miles myself. We are all paying for it today. My shins feel like I got hit with a 2x4. Maybe it was that stupid whack-a-mole hammer.
We're getting ready for a show that is very important to Aaron and will be something to check off his bucket list. It's a reunion show of Comedy Sportz Eugene. It's not only going to allow him to play one more time with friends but it's a fundraiser for us as well.
Our car has been slowly dying. We've put several hundred dollars that we didn't really have into it to keep it running. Today, on top of Aaron being tired from Chemo and Relay for life this weekend, and me hurting after walking 7 miles at Relay, our car decided to revolt one more time. Yet another whack on the head from that hammer. Today it started over heating, having smoke come out from the hood and dying every time I took my foot off the gas. We just put in a new clutch, new brakes, new spark plugs and some other stuff. This car is starting to cost more than it's worth. We were able to get a small loan for a car through a place that works with high risk loans (since we filed bankruptcy). The catch is we have to come up with $1,000 down payment. We're hoping that the comedy show will bring in enough to pay bills and help us get the car we need. Some people may think that that's not something you should do s fundraiser for. Well, if we don't have a car I can't get to work easily, there's nothing there for us if I have to take Aaron to the hospital and as much as Aaron's parents help drive him to appointments and stuff it is nice to be able to take him myself. We're not getting a brand new car by any means. Trying to find something newer than what we have with as low miles as we can get and an automatic.
Thank you for those of you who are and have supported us, be it in prayer, finances or physical help. We truly do appreciate it. I never though something as simple as washing the dishes or mowing the lawn could become such a daunting task. Most days I am so physically and emotionally tired when I get home from work it's all I can do to come up with an idea for dinner, let alone make it. If anyone wants to know what they can do to help just e-mail me. I don't want to be rude but please only e-mail if you truly do want to help. We have had a lot of people offer or say I'm here if you need me but then never hear from them. Right now spending time with Aaron is my priority. We gotta enjoy what we can when we can between hits from that darn mallet. So please contact me if you want to help. Don't wait for me to contact you cause I don't like to ask for help.
I hope we will see all of you at the show next weekend. August 14 · 6:00pm - 8:00pm Lane Community College Theater 4000 East 30th Ave Eugene, OR. Tickets are $7 in advance at http://www.judasforgiven.com/ or $10 at the door. (Kids 6-12 and Seniors 55 and up can get in for $5 but that price is ONLY AVAILABLE AT THE DOOR.) I really want to see a packed house for Aaron. This show is important to him. If you can't come I understand that life is happening as well. But please tell you friends. Pass on the info.
Thanks for letting me complain again.

Scuba diving but my tanks filled with sludge

I feel like we're drowning in in things that need to be done. As I sit here I'm thinking I should mow the lawn/jungle that is accruing, do laundry, wash the sheets, take the comforter to the laundry mat and de-dog-ify it, find the floor in the living room and vacuum it, get the sap off the car and other things I might find need to be done in the process of doing the other things. I don't know where to start. To top it off creditors are calling again.
It's all so overwhelming. What I want to do it go to sleep and wake up to a perfect life where everything is clean, done and Aaron doesn't have cancer. Things just don't seem important anymore. All I want to do is spend time with Aaron. But even then there's nothing I can do to make him better. I'm a very self reliant person. I want to be able to do things by myself. I love assembling things, figuring out how things work. I'm a fixer. When I was little I used to tell my mom "self do it". I want to self do it now! But there's too much for me to self do it.
I want to be everything for Aaron. I know he feels like I'm the best wife in the world, but I feel like I should be able to do more. I know it's unreasonable and I'm only one person.
Aaron's parents have been a great help and I'm very thankful to the people that have helped in the past. I don't want it to sound like no one has helped. I'm just overwhelmed right now.
There is a great opportunity for you to help if you want to. Aaron's going to be doing a show in a few weeks with some friend. It's going to be a great show. You can get more info about it soon on his website. www.judasforgiven.com.
Thanks for listen to me freak out.

The waiting game

Today a new stretch of waiting has started. Aaron had a follow up MRI today to find out if his treatment is working. It's hard to know what results to root for. If treatment is working then that means we get more time together but he has a longer harder road of more treatment and side effects. If treatment isn't working then he'll stop getting the meds and possibly be more comfortable, but I'll have less time with him. It's not even a case if the lesser evil. Neither one is good. Either way I loose the one I love at some point.
So this week, I"ll go to work and pretend all day that nothing is wrong and life is just great. There's no reason our clients need to know the details of the difficulties we go through. They have their own problems. But after work when I come home I am once again overwhelmed with the reality of what's going on. Don't get me wrong. I couldn't ask for a more amazing husband and companion. He's going through all this crap to be with me. He is more brave than I can imagine and he is my hero.
It's just so incredibly unfair that he has to deal with all this. I know what I have to go through emotionally but I have no idea the difficulty he's having.
So if you see either one of us this week and we seem to be on auto pilot we're just playing the waiting game.

New York, New York how I'll miss you

This has been an amazing few days. We got into NYC Tuesday night about 10pm. Wednesday we saw Phantom of the Opera at 2pm. It was a great show. The actors had amazing voices and they're nothing like seeing it in person. On the way out of the theater we heard a woman say to her family that she didn't enjoy it at all. "The movie was so much better". I literally had to stop dead on the sidewalk and look at Aaron who had done the same to grasp what we had just heard. It's almost like they thought the Broadway musical was based on the movie instead of the other way around. Still confused on that. The other show we saw was Wicked, based on the book about the witches from The Wizard of Oz. That was an amazing show. As much as I like Phantom I enjoyed Wicked more. The story is more light hearted and has some pretty funny moments. It was also aranged though the Granted Wish foundation (like Make a wish for adults) for us to go back stage and meet the cast. We ended up hanging out in the Wizards dressing room and chatting with some of the cast for about 1/2 an hour. The only one we weren't able to meet was the woman who played Elpheba (the wicked witch). I assume she was de-greening for quite a while. THe next day we took a double decker bus tour which allows you to get on and off throughout the day. A bus comes to one of the stops every 15 min. so if you want to get off and shop or see a landmark you can spend as much time as you want. If anything it was worth not having to pay for taxi fare all day. It was pretty hot that day and after a while the bus engines started overheating which in turn meant they couldn't runn the A/C. That was interesting. We did have rain for about 10 minutes accompanied by one lightning strike and a huge thunder clap. That's all we got in the city but out Long Island and in Conetticut they had what looked like a tornado, with lots of trees down and roofs caved in and lost power for a day or so.
As I type this I'm on the train from Albany, NY back to the City to take the plane trip home. It was great to see Aaron's cousin Corey and meet her husband JOhn and all the kids. Troy is beautiful. So many buildings built like castles, amazingn churches and beautiful scenery.In theory I would love to come home, pack up everything and move out here to Troy or somewhere close to it. Aaron's parents will be moving out here after Jan retires and I know Aaron would do it in a heart beat. I really think we could both very easily make the transition. Being with Corey's family was so much fun. I actually cried several times last night because I didn't want to come home. We wished we could have stayed another week, or month, or months. It's hard to leave such a wonderful place and come back to the reality of work, Appointments, stress, Aaron having treatments, sickness and just life in general. As much as I love my family (who apparently would feel abandoned and I assume riddle me with guilt for the rest of my life) I would love to just pick up and start somewhere new. I think it's healthy to do that at least once in your life. I've never lives outside a 8 mile radius from where I was born! Yes I have traveled around the country and seen things but always came back to Springfield. Something inside me is torn about whether to stay or leave. But I know I"ll get many suggestions and advice, wanted or not after people read this. I think it's a good thing that we were on such a tight schedule today of getting from the train to the plane becuase I don't have time to think about how sad I am to leave. I know it's hard on Aaron. NYC is finally the place he feels like he was meant to be, as I"m sure you know from reading his blog. If you haven't do it now.
I guess I don't have anything else to say. I can't explain any further how difficult today is. I waS actually looking at appartments in Troy on the train ride to Albany yesterday. Just day dreaming. I could go on and on but it would just be repeating things and mumbling. God has a plan and unless he tells me to go to NY, I guess I'll stay in OR like is expected. But I may pout for a while.

NYC here we come!

So Monday night we go up to Portland to fly out to NYC on Tuesday morning. Right now I'm so excited my stomach has the fluttery feeling like when you're about to go on your first date, or get your first kiss, or see the love of your life. I've been looking at photos on google of the musical Wicked for about the last hour and I just can't grasp the fact that we're going to see that show let alone sit in Steven Schwarts' house seats!(not allowed to say how we got them, but it involved a lot of searching on google and a long shot e-mail that I sent out.) Our first day in NYC will be Broadway madness as we also decided to take the once in a lifetime opportunity to see Phantom of the Opera. So we'll go see Phantom at 2pm then grab dinner and go see Wicked at 8pm.
I can't believe I'm going to be able to go to New York with Aaron. This is one thing I wanted to make sure happened for him. God has been amazing in providing us everything we need as well as being able to do things we wanted as well. I'm not saying we have an excess of money. We've had to be very strategic in our spending.
Making sure Aaron gets to do as much ans he can ofthe things he's always wanted to do has been my goal since his diagnosis and I"ve really taken on the motto that you just have to ask. We've both gone out on a limb for a few things trying to get tickets or opportunities to happen. I used to think that it wasn't worth it and everyone was either going to say no or not respond at all. One thing I've learned(of the MANY things) is you should ask. Don't be afraid to ask for anything. The worst thing that can happen is you get told no. But if you dont' ask you'll never know if something could have happened.
This also carries over to my relationship with God.

Philippians 4:6 (New International Version)⁶Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Go to God and ask him for the desires of your heart. Be prepared for a no if it's not in his plan, but if it is in his plan be prepared for the ride of your life. Also if it's not in his plan, think about how important you felt that request was and how happy it was going to make you. If he said no to that, he's got something even better and more amazing in the plan for you. Make that the new desire of your heart. Aaron has been something amazing in my life. I've asked and still do ask for him to be healed. I know God can do it if it's in his plan. If it's not, then what kind of amazing things does he have in the works for everyone that surrounds Aaron. The thought blows my mind.

Thanks for reading this again. Guess I didn't bore you enough with the first blog. I hope you all get to do something in your life that you've always wanted to do and have your mind blown by that experience, God or both.

Just the beginning

So I finally broke down and started a blog. Let's hope I'm more consistent with this than any diary I've ever started.
I'm having a hard night and I think writing may help. This weekend was incredibly busy. Friday night was Aaron's benefit show. We got to ride in a donated limo and it was a great performance by all. I hadn't laughed that hard in a long time. I actually had a sore throat and ached a bit the next day from laughing to hard. The turn out was not what we had hoped for and after paying for shirts to be made for the show we didn't come out as far ahead as we would have liked for it being a fundraiser. But it was a fun night and that's all Aaron really wanted. Saturday I worked in the morning, then slept to catch up on what I missed the night before, then went out for our friends birthday. Karaoke was fun as usual and it's always fun to hang out with Tim and Caitlin. Sunday morning we had church outside followed by a picnic. Then more relaxing. So why am I so emotional today?! I've been unmotivated, grouchy and tired all day. I've been dealing with horrible cramps thanks to my newly found ovarian cyst but I think this is more than PMS.
We leave to NYC a week from tomorrow. I love planning trips. Finding things to do, a place to stay, getting tickets to things. A radio station that interviewed Aaron a while ago about selling add space on his urn is paying for the flight. After hours searching for e-mail addresses for anyone who may be involved with or have connections to the show Wicked, I got amazing tickets for a ridiculously low price. All that's left is the hotel. I want Aaron to be able to do everything he wants to do and not feel like he missed anything. He says He only wants to spend time with me there but I want him to do things he's always wanted to. So therefore all the planning I enjoy has quickly become a stress that we won't have the funds to do things. Unless we stay in a hostel it's almost impossible to find a hotel that's not miles away from where we need to be for less that $180 a night. I just have this fear that so many things are lining up and there's going to be one thing that happens that will prevent the trip from happening because we couldn't afford it.
I also wish that I could spend more time with Aaron. I have to work full time to keep benefits. It's not an option but some days it's so hard to leave him at home. I feel like I have such a limited time left and half of it is spent with me at work. Don't get me wrong, I love my work and they have been amazing to me. Everyone is very understanding of our situation and they let me have the time I need. It's my own guilt in the back of my head knowing that I'm leaving people short handed that gets to me.
So in seven days we leave for the trip of a lifetime. I get to fly for the second time in my life and it's to NYC! Sometimes I think it would be nice to pack up and leave everything and move there. But then I realize that the cancer would follow us there and we can't afford to fly the amazing people from Willamette Valley Cancer Institute there with us. So that's out.
So I'll just try to choose joy in the situations I can't control and trust that God will provide us with what we need when we need it.
Thanks for reading. Hope I didn't bore you too much.