Not Sleeping Well

EDIT: I FORGET TO POST THIS WHEN I CREATED IT A WEEK AGO. I'VE COMBINED 2 POSTS TODAY.

MAY 30th:
Not sure why but for the last week or so Lori hasn't slept very well at all. She's been doing a bit more than she used to - made three or four trips to the store in the past week or so. Maybe that's it.

As I had posted earlier she has her disability approved so it shouldn't be from worrying about that . . .

She says she is not worried about our trip to Atlanta next week.


JUNE 6TH:
As of today it has not gotten any better. She has once again been unable to do anything. Hasn't really been this bad off in weeks at least . . . maybe longer.

She did have a nice visit yesterday with both her Mom and Dad. They brought her some flowers. Stayed for about an hour. Lori slept for the rest of the day for the most part.

Got her lab results back today for our trip tomorrow - see the next post for more - it's not good news . . .

Chemo Treatment #5

Our next trip to Atlanta is scheduled for the 8th of June. Due to Dr Tumlin and his assistant being on Vacation and the Memorial day weekend it was pushed back from the 1st to the 8th. Lori will go get her labs next week. Everybody cross their fingers things are still going in the right direction!

On a side note - I know I haven't posted that much lately. I think it is just becoming such a routine around here nothing seems to change. There are good days and bad days - almost never a great day. We have just accepted the facts and have adjusted our lives accordingly. We now have someone come in a help with the cleaning. We eat take out more than we cook - or we will just have a sandwich for dinner.

So - if I don't post as much it's probably because we are so used to things as they are. I guess that is a good thing.

I'll post more when we get Lori's labs back next week - or sooner if something happens

A Bitter-Sweet Day

Well - today was a good news / bad news kinda day. The good news, Lori's long term disability (through Hartford insurance - not social security) was approved. The bad news, Lori's long term disability was approved.

Approval means that she will get her disability check from Hartford until she turns 65. It also means that Hartford will help by providing an attorney if needed to get Lori's Social Security approved. The way it works is Lori is guaranteed a certain amount of $ through Hartford. When Social Security kicks in Hartford's liability is reduced by the amount Social Security pays. Since Hartford is going to be paying for the next 20 years it is to their benefit to get Lori approved for Social Security as quick as possible. Make Sense?

Approval also means someone agrees that Lori will never be able to work again. Not a fun thing to face. Lori is handling it pretty well. She has her ups and downs with it.

She made her 1st outfit for one of her Chatty Cathys yesterday & today. It came out cute. Should be a good hobby for her for a while - as long as her hands don't start cramping up. Maybe it will be good for them.

More later . . .

You are my inspiration

Lori,

There are some things that I have wanted to say to you recently. I guess finishing your Social Security application helped me to decide that now was the time to speak.

We have been through a lot together, especially in the past couple of years.

One of the biggest things that happened was we bought our house! The exact house we asked for. Add some new furniture, some paint, a few walls and soffits here and there, and a whole bunch of DVDs (lol) and voila, you worked your magic and turned a “very nice house” into our home. One room at a time we played “the game” until we finally found what we were looking for. Thank you. Just a couple of rooms to go! (Then we can start over).

We witnessed the graduation of all three of our boys. How proud are you?! Last year we watched R & J walk across the stage with honors. Then spent the summer getting them set up in their new apartment (remember the duck pool?) This year we got to watch Mike grow and change like there was no tomorrow. To start college before he even graduated high school was quite ambitious for him. His decision to stay at home this summer to “help out” still chokes me up. Thank you for your guidance in raising three happy, well adjusted, smart, and good young men.

On a more somber note, we lost one of our best friends, Mackenzie. While she will always be with us we miss her every day by all of us (and nearly every minute by me). I don’t know what I would have done if you weren’t there to help me get through it. Thank you.

Our lives have changed so much in the past year and a half. The biggest change unfortunately has been your health. I watched you every day struggle to just get to work, just taking a shower, just to go to the bank by yourself, just to cook dinner, or maybe just to clean up from dinner.

I started driving you to work so you could save the extra 50 paces to get from the parking lot to the building. Once at work, no matter how tired or sick you were, you became everybody’s sunshine. Simply walking into a room and smiling would brighten it up. You touched everybody you worked with in ways that will be with them forever. You got so much pleasure from doing your job, and doing it better than anyone else ever has. I know it really ate you up inside as you got worse and you started missing days. You never let on how sick you were until you just couldn’t keep it a secret anymore. I know you miss all of your friends very much as I’m sure they miss you.

So – with all of that said – here is what I started of wanting to say. You are my inspiration.

You showed such strength at work. Spending every ounce of energy there and then coming home to recharge. When recharging stopped working, you came up with other ways to give them everything you had. You never complained and always, as I said earlier, were the bright spot in the room. You sat and listened to everyone else’s problems never letting on about your own. You were a true blessing at the Spa.

While at home you realized you limitations and, again, never complained. I know you would have like to have gone to more of Mike’s football games or competitions but just couldn’t. When we got home, no matter how late it was, you would be up waiting with your room lighting smile asking how it went. “Where you going Mike – tell me about it” is usually how it went. I also remember you getting schlubbed around during Ricky & Jason’s orientation at USF. Could it have been any hotter? It took everything you had just to make it through the day. Again, nothing but smiles.

I could go on for hours giving examples of how you hide how sick you are when you feel a need to, but I wont. I will say that there hasn’t been a family gathering in the past three years that you didn’t amaze me with your determination to get through without letting on how tired you were.

I have never, nor will I ever meet a person who is stronger, more giving, caring, or positive than you. You ALWAYS put the other person’s feelings before yours, no matter how bad you feel and truly do give till it hurts.

The sound of your laugh and the way your eyes light up when one of your boys comes home always warms my heart. The way you laugh at Lucy or sit and try to name your squirrels is a constant reminder of your strength and positive attitude. Please know this, all that I am I am because of you and all that I have I have to give to you. Together we will make it through whatever the future has in store for us and come out stronger than ever.

Zub

Social Security Disability

Well – we finally got the Social Security Disability forms filled out. This was a very hard thing to do. To tell yourself that you will never get better and you will never be able to work again is not a good thing. Below is Lori’s “final thought” that she put on her application. There really isn't much more that I can say . . .

I have been fighting my disease for many years now. My condition has steadily worsened, especially in the past two to three years. Many family members and friends have been telling me for quite some time that I should apply for disability, yet I did not. At the age of 45 I could not envision myself not working ever again. Unfortunately I have resigned myself that this is going to be the case. I simply do not have the strength to get through a normal day.

In addition to not working my home life had to change as well. I can no longer clean my own house. I have trouble just taking a shower. We have a two-story house and I find it increasingly hard to get up and down the stairs. Some days I can't do it at all. If I am planning on cooking a meal I have to sleep for an hour or two just to be able to stand in the kitchen and cook for a half hour. Most days when I plan on cooking I get too weak and either my husband cooks or we get take out. I can’t go shopping without help. Occasionally I do go to the drug store or to the bank by myself, but that's about it. I used to go shopping for the day and go from store to store. Now, my husband has to drive me, I have to use an electric cart, and even with that I might last 2 hours without really feeling sick.

It was very hard for me to decide to do this but I truly feel that I have tried everything I can and this is the last thing I can do to still help my family. I am grateful that we have a system like this in place for those of us who truly need it.

Went Swimming Today

After our afternoon dip in the Hot Tub Lori went in the pool today (I guess actually it was yesterday). She decided to take a few laps while she was in there. She made it back and forth 3 or 4 times (stopping to play with Lucie in between).

I guess it was too much for her. About a half hour later she crashed hard. She slept the rest of the afternoon. Mike brought dinner home - Lori got up to eat and watch a little TV and then back to sleep.

She is sleeping now - but not too well. Coughing a lot for some reason. Real dry hacking cough. Hope she gets some rest.

Birthday & Mother's Day Weekend

The day after the band banquet (see previous post) was Lori's birthday. Unfortunately for Lori she spent most of the day in bed sleeping. She didn't feel all that bad - she was just completely drained. I felt bad for her. She watched some TV with Ricky & Jason but mostly slept.

Reed was supposed to come over later in the day to say hi (he was in town for mother's day). Lori also wanted her Mom & Dad to come over for dinner. Nothing fancy - leftovers heated up in the microwave. Reed didn't show up but Lori had a nice visit with her Mom (her Dad was in the other room for most of the evening).

Mike had a parade that evening so he missed dinner. When he came home we opened a couple of presents. I think (hope) she had a good day.

Mother's day was a really enjoyable day. We watched a couple of movies and just hung out. Lori played with her new sewing machine she got for her birthday. I made some chicken breasts on the grille for dinner. After dinner we watched another movie. At the end of the day you could tell she really had a good day.

Band Banquet

Last week Lori and I put together the final touches for the Band Banquet (Mike's Marching Band). Lori volunteered to be the Banquet Coordinator at the beginning of the year. She was responsible for just about everything. Most of it she had completed prior to our last trip to Atlanta. There were however some "situations" (as Lori calls them).

We found out that we would have 250 people not the 150 people we originally planned. While this was a good thing (it was the largest banquet the band has had in years) it meant lot's of scrambling to get the extra food, decorations, balloons, etc. Also, our dessert person bailed on us at the last minute, so we had to figure that one out.

Lori was still recovering from her treatment while doing all of this. For the most part she dictated emails to me and did some online ordering. It was a long week but she made it through.

We got there early to set up. Lori supervised the kids and once it was just about done Mike brought her home to rest before the party actually started.

She made it through the evening. We brought her wheel chair to sit in so she would be more comfortable. It was a great night. Lot's of compliments regarding the food and decorations.

Mike was recognized a couple of times for his accomplishments. It was really a good night for him. He was awarded the most outstanding senior among other things. We were both very proud.

It was a really hard week for Lori to get through but she made it. I know she was glad she was in charge. She hasn't had a project to tackle since she had to leave work. Even though it wore her out she enjoyed it.

It really was a nice banquet.

Spoke too soon

In my last post I was very hopeful that this time would be an easy one for Lori . . . (buzzer sound) *ehhhhh*. . . wrong answer.

Yesterday when she woke up the all over pains were really bad. I couldn't even touch her in some areas without making her jump. It was one of those "soft hug" days. As the day went on she really started declining. About 8:00 last night her energy level went from a "1" to a "0". The level where she doesn't even move her lips when she talks. The nausea kicked in about 10:00. It was not a good night at all. She went to the bathroom around 7 times in the six hours she slept.

This morning she has it all. Flippy stomach; nausea; pain ALL over her body; energy level "0"; and the jittery feeling she gets 3-4 days after the treatment. Knock on wood she has not been troubled with a migraine except for the 1st day - and that went away fairly quickly.

So here we are again - just another day four, full of soda crackers and ginger ale, a completely "yucky" day for Lori and nothing I can do to make her comfortable. Just wait with her till day 5, 6, or 7 when this all passes - I guess . . .