Cold.....chemo....snow....fights

Today is a snow day. Which means my plans of working out in solitude, showering in peace, and running errands efficiently have been left unplowed beneath the several inches on the street. They will be found after the Clipper leaves us and the snowplows shove enough accumulation off the road to find the remnants of what remains important. Nothing like children at home to remind us of time management and prioritization.

I wanted to take this moment to update you on Brian after his first round of Carboplatin and Avastin. Monday morning, before his dad picked him up for treatment, Brian had a vomiting episode again. Bummer. BIG BUMMER. He hadn't had one in over a week. He had another when he arrived at the clinic. He took the chemo fine. He was pale and tired when he got home, but he did okay.

Yesterday, he had several vomiting fits again. We are unsure if this is chemo related or connected to whatever else has been going on with him. He is not nauseated and does not feel bad, he simply feels an urge to vomit and cannot stop it. It is rather unpleasant for all because he is not quick enough on his feet to make it to the toilet and not stable enough on his feet to get to a kneeling position in front of the toilet. He keeps a bucket nearby. He does not feel a huge urge or sensation, it comes upon him quickly, so often the kids are nearby when it happens. I think it scares them. Yesterday, I was upstairs on the phone and Grant came up to tell me to please check on Daddy. He said he heard Daddy throwing up and I should check on him. So, I did. Then I played MarioKart with Grant to get his mind off it. I asked him if he had any questions or if he wanted to talk about it. He didn't. I told him I was very proud of him for helping take care of Daddy.

Brian has started to walk with a cane this week. I am glad about this. He is stepping on his right foot wrong more and more often. He walks pigeon toed with his right foot and often steps on the outside of his toes causing his foot to roll. I am afraid he will sprain or break something. The biggest problem with the cane is that he has to use his left hand to hold it. This is his only free hand. He can't really hold things in his right hand. It limits him even more.

His speech has been hit or miss. He says he is experiencing the "chemo stupids" - meaning the chemo makes him stupid, sort of clouds his thinking.

He will be due for another MRI in about 2 weeks or so.

The cane and vomiting are starting to scare the kids more, I think. They are asking me more and more questions about death - particularly Gavin. It is difficult to field. I have always been very honest and open with them about Brian's condition so they do not feel scared or are not blind-sided if Brian takes a turn for the worse or has a bad day. Lately, though, Gavin has been more scared. He does not want to leave the house to play with friends. He only wants them here. He says he doesn't want Daddy to die when he is away. He makes me check on Daddy at night sometimes when I am putting him to bed so that I can assure him that Daddy is still alive. He is worried he may be at school when daddy dies. He is simply more scared. We have talked about what would happen if Daddy dies and that eventually Mommy would go back to work so I could pay for us to live. He was very worried about what that meant for him. He understands now that he is getting older his everyday life would change. Mostly, though, he cries that he doesn't want Daddy to die because it would mean he would never see him again. I really don't know how to handle this exactly. I assure him we will be fine. Daddy is okay today and we need to enjoy each day right now. We can't worry about dying because we will all die some day. We just don't go around thinking and worrying about it all the time. Gavin is my worrier. He is my thinker. This is troubling for him. Rightfully so.

Well, I have to go break up the third fight of the day. It is not even 9:00 am. Ahh, snow days.....

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Happy Birthday, Dad

Today is a very special birthday for my dad.

You know those birthdays that were big deals -

every birthday until you were 10.

When you turned 16

When you turned 21

Turning 30, 40, etc...

But, I won't disrespect my dad and tell you how old he is.

I'll just tell you this is a big eventful birthday because it is the one where he can....

START DRAWING SOCIAL SECURITY!!!

Congratulations on your first raise since early retirement all those years ago, Dad!

Dad's favorite Christmas present. "F-r-a-g-i-l-e . Huh, Must be Italian."

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The house that Larry built...

This is the house that Larry and Karen built.

This is the driveway that often serves as a basketball court that sits next to the house that Larry and Karen built.

This is the tree that drapes over the driveway that often serves as a basketball court next to the house that Larry and Karen built.

This is the aftermath of a freakish Christmas windstorm that blew the tree that drapes over the driveway that often serves as a basketball court next to the house that Larry and Karen built.

This is the van that was injured in the freakish Christmas windstorm that blew the tree that drapes over the driveway that often serves as a basketball court next to the house that Larry and Karen built.

This is the furrowed brow of the owner of the injured van after the freakish Christmas windstorm that blew the tree that drapes over the driveway that often serves as a basketball court next to the house that Larry and Karen built.

This is the son of the furrowed brow owner of the injured van after the freakish Christmas windstorm that blew the tree that drapes over the driveway that often serves as the basketball court next to the house that Larry and Karen built.

This is funniest picture taken (just ask him) by the son of the furrowed brow owner of the injured van after the freakish Christmas windstorm that blew the tree that drapes over the driveway that often serves as a basketball court next to the house that Larry and Karen built.

This is what happens to trees that fall on innocent vans after hilarious pictures are taken by the son of the furrowed brow owner of the injured van after the freakish Christmas windstorm that blew the tree that drapes over the driveway that often serves as a basketball court next to the house that Larry and Karen built.

This is what the co-owner of the injured van does while the tree that falls on innocent objects is being dealt with after hilarious pictures are taken by the son of the furrowed brow owner of the injured van after the freakish Christmas windstorm that blew the tree that drapes over the driveway that often serves as a basketball court next to the house that Larry and Karen built.

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some prayers answered

Okay, so we have made some progress the latter half of the week.

Brian and I met for about 2-1/2 hours yesterday with his employer understand this voluntary package and what it means for us. They had just received word that those on short term leave were eligible which is why they called us and wanted us to know about the package. They had an obligation to ensure we were aware, but the deadlines were already in place. Thanks to their time and efforts, I feel very informed to make an informed and detailed decision. It is a great package for anyone close to retiring or anyone that was considering changing employers or has something else in the works or was considering leaving the company anyway. It makes incredible sense for us if we think Brian would not survive the year. About this time next year, it breaks even for us and becomes a bad decision after about one year. So, basically taking the package means betting against Brian's survival in so many words. We have decided to put our names in as eligible knowing we have some time to take our names out. If we didn't put our names in as eligible by Monday, it would not be an option at all. This gives us some time to monitor Brian's progress and make some decisions based on that. If we get some devastating test results, knowing we are down to our last treatment option, that would lead us toward taking the package. If not, I personally, would not bet against Brian at any point in time. While we have never talked to his doctor about exactly how long he expected Brian to survive, I would venture to guess he is surprised to see Brian still kicking it as he is. Who are any of us to assume how long he will continue to do exactly that?

Regardless, we have a few more weeks to think about it. If Brian deteriorates in that time, this could be the answer to some more financial security for me and the boys. If he does not, then it could be the answer to his healing. Regardless, it is a prayer answered in some way.

That being said, we have also made progress with the chemotherapy. Not to bore you with the details, but some angels that I don't want to mention because they are doing us a large favor are making it happen and we are extremely grateful. Brian will undergo chemo this Monday - Avastin and Carboplatin. We are paying for some of it out of pocket, but our portion is very affordable so far. The insurance won't budge. At this point in time, it doesn't matter, though. That prayer has been answered.

Brian is doing okay. We have had to have some very difficult discussions regarding his condition, his outcome and our feelings about the future. It is difficult and emotional, but we both know that we have to think both ways and be as objective as we can about what will happen if he survives or if he doesn't.

Brian's right side seems to be getting just a tad weaker. He is starting to fall or nearly fall more and more. Walking is becoming more challenging at times. He is way too proud to use any sort of assistive device, though. I respect whatever he wants as long as he is safe. I am so thankful for the disabled parking placard. It has really helped a lot these last few months. He pushes through all of this, though, with a good attitude.

We switched his anti-seizure medication from generic to name brand again. Brian has had no vomiting and little feelings of dizziness since Sunday. We made the switch on Tuesday. So, this is very encouraging. This is a prayer answered.

I have been so much more at peace the last couple days. That is a prayer answered.

Thank you to those joining us in prayer.

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What happens now?

We had our appointment with the surgeon yesterday. He was pleased with how Brian looked and was speaking. We explained about Brian's vomiting episodes. He had two theories. One being that Brian could have something viral going on that manifested in his inner ear as can happen with sinus viruses causing some sort of vertigo issue. If this is the case, it should clear up on its own. His second theory was that the Keppra (anti seizure drug) Brian takes which recently switched from manufacturer to generic may be causing this. So we are going to start taking the non-generic formula again for the additional cost.

The CT scan Monday looked fine - the ventricles are not enlarged or smaller showing the shunt is working fine. In addition, the tumor has not grown. However, it is showing increased enhancement meaning the areas in question are still considerably in question and probably "hot."

We told him we were leaning to chemo instead of surgery at this point in time. He has no issue either way with our decision.

We are still having issues with the insurance approving the chemo for Brian's condition. Latest we heard was that it could be A MONTH before they have a decision. So, today I have to make that unpleasant phone call myself to implore on the insurance company's good nature to rush this as my husband has not had any treatment for his illness in 3 months and this is our last option. Tentatively, though, we have scheduled for Monday, January 12.

Today we received a phone call from Brian's employer who is offering the company voluntary separation packages. The package makes incredible sense for us if we think Brian is not going to survive for the next 6 months. If he survives the next 6 months, it becomes riskier. After 18 months, it becomes disastrous unless I am back to work at am employer with good medical benefits at that point in time. I did our budget yesterday assuming Brian would be on his short term disability until October and start long term reduced salary in November. With this, it is most likely that I will need to go back to work sometime this fall anyway to make ends meet. This is stressful given the current job market. The major employer in this town is trying to get its employee's to separate in order to avoid layoffs. There is little available right now. I have an engineering degree, but have always worked in accounting/finance. Accounting/finance has changed drastically in the last few years since I quit with the implementation of Sarbanes Oxley rules and more and more companies wanting CPA's. I am not going back to school to become a CPA. Also, I don't want to be at a new job if Brian is getting sicker. I want to be with him taking care of him and taking care of my boys. I want to give my boys stability and love and assurance - not day-care and mommy gone a lot, etc.

I am stressed. I knew this would be the year of making big decisions, but I didn't expect them all to come upon us so fast. I am a mess. Also, I wasn't going to say this because I don't want to do this with any attention on myself, but I am trying a 3 week fast. I am not doing a full fledged fast, but fasting from a few things in my life that I know I can go without. I am replacing them with prayers for Brian's healing and for our financial provision. So, when opportunities like this voluntary package come along, I don't know if it is God's way of saying "here is my provision for the next year" or if it Satan attacking our faith for Brian's recovery. Also, we have to make our decision on this by MONDAY.

Here is what I am stressed about:
Insurance issues with chemo next week (waiting another month is just not an option in my mind)
Making the phone calls for the insurance issues.
Decisions about chemo/surgery.
Making a decision about the separation package.
Going back to work/making ends meet.
Sticking to the fast for renewal spiritually.
Finding a new pediatrician for the boys.

Please pray for us.

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she's got eyes of the bluest skies...

AND NOW FOR SOMETHING COMPLETELY DIFFERENT JUST TO CHANGE THINGS UP AROUND HERE....

Andrew, Lauren, and Lexie,

This is for you...


And a little for me. Makes me laugh Every. Single. Time.

Hope the laugh helps the wounds of the Minnesota loss mend easier for Kevin and Andrew - the only Minnesota fans I know that have never been to Minnesota.

And you're welcome for having "Bowm, bowm, I'm DE-E-E-REK and I can sing High like TH-i-i-i-is....." running all through your head all day.

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running in circles

I feel like I have been here before - TIME AND TIME AGAIN. Brian had his oncologist appointment today and was supposed to start chemo. Well, it appears this chemotherapy regimen of Carboplatin and Avastin has not yet been approved by our insurance for Brian's diagnosis, so we have to get special approval. Approval for which we are still waiting. According to the oncologist office, they have checked a couple times with the insurance and are awaiting approval and were told today 5-10 days. Are you stinking kidding me??? This was scheduled Dec. 10 and this was the first we heard of an insurance issue. We could have been working this all last months. Now, we have to wait for Brian to get sicker while what? the insurance files a few papers and finally approves this because this is all we got left???? Can you tell I am fuming?

But more than the insurance approval issue is the lack of communication again. There was absolutely no reason for us to go into the office to find this out today - this is a phone call that should have been made to us before we left the house - "Hello? Mr. And Mrs. O'Neill? It appears your insurance still has not approved the chemotherapy Brian has scheduled for today. There is no reason for you to come in unless you are having another issue you would like to talk to the doctor about. Maybe you could call the insurance company yourselves to assist in our plight for approval. And let's go ahead and get you on the schedule for next week to make up for this. K?" Only that would be in LA LA LAND...

AND? We paid for the stinking office visit...

As it turns out, due to Brian's vomiting issues, he is currently undergoing a CT scan to see if perhaps the shunt he has is clogged or backed up causing him pressure issues.

Also? We have an appointment with the surgeon again tomorrow to discuss the surgery he mentioned. So, maybe this cancellation of chemotherapy today is God's way of telling us to think harder about the surgery.

It is very confusing and frustrating and I feel like we are right where we were mid-November. Not moving forward. Just waiting. And deciding. And struggling.

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Oh where, oh where has my little blog gone...

Bloggonit, it has been a VERY long time since I last posted. And there is good reason for that. I have not been home. And we do not own a laptop. We are stuck in this house to the old computer desk (which is now in the same room as the new Wii after some rearranging) if we want to cop some computer time.

I am sure I have lost just about every reader I had that read this blog for any reason OTHER than to find out how Brian fares. Since that is the case, the remainder of this post will be to update you on exactly that.

I had said that Brian was going to start chemo on Dec. 29th. We delayed that a week. He is now to start tomorrow, Jan 5, 2009. He has an appointment sometime in the morning. Only I have no idea what time because the last few weeks my brain has been in the toilet or covered in vomit or something along those lines and I don't know where I wrote it down but I didn't write it in my calendar and don't ask me why - I am sure it has something to do with vomit. I will explain.

On Wednesday night, Dec. 17th, Gavin complained of an upset tummy. He began vomiting around 10 pm that night and proceeded to upchuck no less than 7 times until around 10:00 am. He was on the mend, but missed school Thursday. On Thursday night we received one of our many recent ice storms, so school was cancelled on Dec. 19th. Gavin's Christmas break therefore started at the end of school on Dec 17th. When none of us showed signs of the stomach bug for the next three days I assumed we were in the clear. Not so. Brian woke up vomiting all day on Sunday, Dec 21. Grant began vomiting on Sunday evening. I never did. I told Brian, however, that it would be nothing short of a Christmas miracle if I didn't end up with this stomach virus. When I didn't get it for the next three days, I assumed that was the case. Rather, I awoke on Christmas morning with feelings of nausea and illness all day. The good news is that no one else in our extended family was plagued with the illness. No, there seems to be a special place reserved for us on Satan's hit list for ailments.

We were hopeful that Brian's episode that Sunday could be attributed to the bug, but we are not sure. You see, Brian has been having many of these episodes lately. Sometimes it is limited to once or twice in the morning with a pleasant afternoon. Other times, it lasts all day - for instance Dec. 13, Dec. 21, Jan 1. He had smaller episodes on Dec 24th, Dec 30th and Jan 4th. He just vomits. It is strange. It is scary. It is annoying for him. He can't make it to the bathroom in time, so he keeps a bucket nearby and that is embarrassing for him if the boys are around. We can't keep them away all the time, though, and we never know if or when he may be overcome with an urge to vomit. And I know this all sounds gross with the overuse of the word vomit, but it isn't really nausea. He is fine one moment and then just throws up the next, so the term 'vomiting fits' is the only way I know to explain it.

In addition, his right side appears to be getting weaker with some balance issues. Walking for much of a distance is growing more challenging and any sort of uneven surface is just about out at this point in time. He struggles to open most cans and his pill bottles, but insists on trying. He still navigates stairs as long as there is a railing.

He is tired a lot. He watches a lot of movies, TV and football right now. Sometimes he watches it like our dads have been able to do for so many years through closed eyelids and between snores.

All that being said, he is in decent spirits. Admittedly, we are both getting frustrated with the frustrations in our lives if that makes sense. We didn't let them get us down for the holidays, though. We went to my mom and dad's for several days and Santa came there. We spent the new year in Kansas City with Brian's entire family which was very pleasant. There was a lot of driving involved and since I am the ony driver now, it can be taxing on me, but we work through it. The last two weeks went by very quickly. Unfortunately, Brian woke up on New Year's Day with a full day of his vomiting spells. That wasn't the way he wanted to ring in the new year. He was much better most of the next day. He doesn't have much of an appetite in general, though. We were able to squeeze in many games of Euchre and a few board games with the kids. Let me just say that Brian is the best one handed Euchre dealer and player around.

I don't know what all of these issues mean for starting a new round of chemo. I have no idea if the episodes are something more to worry about or if the doctor will suggest we forgo chemo longer. I just don't know. He has his appointment SOMETIME tomorrow, so we will ask tomorrow. In the meantime, the surgeon also wants to meet with us on Tuesday to discuss whether or not he attempts some surgery in an effort to debulk and maybe give Brian some more time.

As you can clearly see, things are the same ol', same ol' here for us. Don't know what we are doing. Brian doesn't feel great, but tries his darnedest not to let it get him down. Kids start school again tomorrow. We mange some time for friends and family. We play each day by ear.

That's about it from here for now. I will write more this week.

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