Friday, October 31, 2008

Surgical consultation; Oct 30

We met with the neuro-surgeon as scheduled on Thursday. As you know, Brian was not very gung ho on the idea of surgery for many reasons. I could recap them, but I am tired of retelling it. Forgive me.
We both fully expected the surgeon to come in and convince Brian surgery was the best option at this point in time. Brian had never met with this neuro-surgeon. In April of 2007, when we discovered the recurrence and knew we needed to take surgical action, Brian had a lengthy telephone conversation with him to discuss surgery. Brian also revealed to this doctor at that point in time that we would most likely be traveling to California for the surgery with a doctor that we had used in the past. He was incredibly supportive and Brian remarked back then how impressed he was at the surgeon's approach and attitude. I researched the surgeon and remarked how impressed I was at his mug. (seriously, go click, Me-ow!)

Where was I? Oh yeah.

Dr. K comes in and tells Brian he is glad to finally meet him. He wastes no time beating around the bush and says, "Well, you know why you are here. You know what is going on. You just have to decide what you want to do about it. Brian, if I remember correctly from our last conversation (note: 18 months ago) the Lord is in control here." What? Be still my beating heart. Did I just hear a doctor, no wait, a SURGEON, say "the LORD?" He didn't say, "your God" or "your faith." No, he said, "THE LORD." I immediately felt peace in his presence.

He went on to discuss and think through out loud exactly all the same scenarios we have played out. Is this tumor? Is this treatment change? (from radiation or chemo?) If it is tumor, then surgery isn't really improving much except debulking something that is growing at an alarming rate and wouldn't be worth the risk. If it is treatment change, then it could do some good to debulk and relieve some pressure. He thinks there is a pretty decent area to enter with fairly little risk to Brian. "Fairly being the key word" in his words. There is always risk with any surgery. As he gets deeper into the enhancement, he gets closer to vital functions for Brian - mainly his speech.

The thing is, the enhancement isn't showing all the normal characteristics of tumor progression. It also isn't showing all the normal characteristics of treatment change. It is showing signs of both. Experience and instinct tell him it is more likely tumor progression. While the Petscan is encouraging, it is difficult to believe.

(In the what-the-heck-is-that and why-are-you-showing-this-to-me categories: This is Brian's brain. The top picture is from the Spring. The bottom picture is from the Fall. You can see the considerable growth of the odd area of enhancement on the right (which is actually flip-flopped from reality: the tumor is on the left just above Brian's ear.) It is now the size of a golf ball. The various colors of enhancement on the bottom are more typical of tumor progression. The more definitive lines around the enhancement are more typical of treatment change. )

Then he said something that made a lot of sense and we hadn't really considered, "If it is treatment change, then theoretically, it shouldn't really change much for the next scan. I think it is very reasonable to watch this for the next scan and make a more informed decision then. If it doesn't change, and you are not having additional problems, we could very well continue to monitor this."

Also, he said, "Brian, at some point in time, you have to say, 'no more surgeries' and put yourself in the Lord's hands and submit to whatever His will may be for your life." And that is exactly what Brian has done. Still, to hear a surgeon say it, was somehow comforting. It was comforting to know God led us here to this surgeon who is a fellow believer.

So, here is where we are: Brian has another oncologist appointment on Monday. We will discuss what chemotherapy we continue with from here. The last thought on this was that if we are considering this may be treatment change, it wouldn't be unreasonable to continue with the same chemotherapy. We will further discuss this on Monday. Brian repeats his MRI on November 17. We will make an appointment on Monday to get those results. No surgery for now.

Here are Brian's and my thoughts: The fact that the enhancement is growing at an alarming rate, is obviously concerning. The negative PetScan is encouraging and directly contradicts normal tumor progression. However, false negative brain Petscans are not uncommon. The fact that the enhancement is following neither the normal characteristics of tumor progression nor treatment change is difficult to decipher. We think it is God's way of saying, "KEEP BELIEVING. No matter what, trust Me. I have a plan for you and will take care of you either way. Keep hoping in Me. If it is tumor and Brian continues to worsen, I have you in My hand. I will be with you the entire way until Brian comes home with Me. If it is not tumor, then your entire hope is in Me. Regardless, enjoy your 'borrowed time,' live each day like it may be your last, and continue living in faith."

So, we will continue doing exactly what we have been doing. I think we are doing it well.


Thursday, October 30, 2008

appointment with the surgeon

We meet with the surgeon today at 2:30 (ish)(CDT). Please pray for wisdom and guidance for us. Brian is VERY leery on any surgical option. He simply does not want to go through ANYTHING remotely close to what he went through in April of 2007 (you can go through the archives and read about that hell of a journey). He does not want any more deficits than he has now. If he is living on borrowed time (well, I guess not IF, we all are, really), he wants to spend it enjoying his family and friends and surroundings, not recovering from surgery. Etc. I find that admirable.

Anyway, if you read this post before our appointment time. Think of us. Pray for us. Etc.

Once again, I am humbled by all the response and love to our situation. I keep telling Brian what an amazing impact he has had on the world. He doesn't get it, he says, but in the end, isn't that what we all want: to hope we made a difference for the better on the world.


Tuesday, October 28, 2008

Next Steps

Today we went into Brian's office together to clean it out of personal items. He is officially on long term disability now and rightfully so. As with every step we have recently taken, it was much harder on me than on Brian.

Brian said some things to a few co-workers and gathered one box of personal belongings. Belongings that will probably sit in a box untouched for an indefinite amount of time. It was hard to decide what to say to each co-worker. Some of these co-workers are long time friends. Friends that are agonizing while witnessing their friend become more ill.

Brian and his Dad, who worked for Cat for over 35 years.

I took my first steps with reaching out to Caterpillar HR. They are compiling financial and benefit information on my behalf - life insurance, cobra amounts, pension numbers, etc. The financial impact of Brian's health on me and boys is my biggest concern. This concern is compounded right now with the economic crisis in our country. We have lost over 40% of our savings. We are also under-life-insured for a family of 4 with a stay at home Mom. My degree is in Engineering Management, but I have always worked in areas of accounting. Accounting has changed drastically due to the collapse of Enron, World Com, etc. with most companies demanding an accounting degree and CPA or CMA after one's name. Re-entering the workforce with a salary to support my boys in a job that doesn't require 10-12 hour days as a single mom, with the meager savings we have remaining and the 3X Brian's salary in life insurance (he was diagnosed 1 month after we were married making adding life insurance impossible) is the ONE thing (or many things, I guess) that grips me with fear.

I would be remiss not to mention at this point in time what an amazing employer Brian has had the privilege of serving. Caterpillar has treated Brian with the utmost dignity and respect. While dignity and respect are well-deserved by Brian, many employers would have shut the door on Brian at the first signs of his illness. Eleven and a half years ago, when Brian was first diagnosed, Brian had JUST been transferred to Denver with Caterpillar. I wrote of it here. In those three years, our medical benefits were outstanding. We had to wrestle with claims a few times, but in the end, everything was always covered. All surgeries, all second opinions, all treatments, everything. Caterpillar is self-insured. Throughout the years, as medical costs sky-rocket (thank you malpractice suits), Cat has had to cut back on benefit coverage - raising premiums, adding deductibles, increasing co-pays and out of pocket expenses. Each time, it has been in essence a pay cut for us due to Brian's serious illness. However, each time, the benefits are still better than probably 75% of Americans. We know we are blessed in that regard.

After 4 years of remission, Cat took a chance on Brian in 2005 when they offered him a promotion and a new job in Canada. We snatched up the offer and felt very confident that we were on our way to the next phase of life with cancer safely behind us. While that was not to be the case, I do believe anyone that worked with Brian the 2 years he was in Edmonton, Canada, would say he was a true asset to the organization and it was entirely worth the time and effort to have him there. He loved his job, loved the people, loved his products, and loved his company.

When Brian needed surgery in April 2007 and we were living in Canada, Cat was beyond accommodating assisting with an expedient move back to the States, transportation to and from the hospital in Brian's fragile condition, etc. Since then, they have always found a place for Brian in the organization. They have always tried to best utilize his skill set within his limitations while ensuring he stayed sharp and challenged without undue stress.

In short, they have been amazing.

And now, as we are unsure about the future and unsure about the timing of what may come next, they are kicking into high gear to do the leg work for me. They are once again, going above and beyond to make this as easy on us as possible.

Say what you will about big yellow, in my book, Caterpillar is one hell of a top notch company. I am honored to have worked there for a few years and I know Brian is proud to display the Caterpillar name across half his wardrobe.

Caterpillar is just one of the many blessings we have been counting lately. Today, as Brian packed his box, I felt compelled to acknowledge that.


Monday, October 27, 2008

What now?

First things first. Brian had a doctor's appointment today with his oncologist. This was a planned appointment from weeks ago assuming we were on the same Avastin and CPT-11 schedule. He was disappointed and surprised the surgeon had not called us to discuss surgery. He thought the surgery was an option seriously worth discussing with the surgeon. Brian explained that he did not want to have a surgery that would leave him with ANY further deficits and he said based on his discussion with the surgeon, the surgeon did not feel there would be. He felt like he had a clean shot to the area of enhancement.

The second point was discussion of what the area of enhancement is exactly. As you know from my many prior posts, with the brain there is NO WAY of knowing for sure, barring taking a sample surgically, exactly what the enhancement consists of. The board as a group collectively hypothesized last week that the area was growing tumor based on a few factors. The PetScan on Tuesday showed little activity leading to a conclusion that it would NOT be tumor activity. This is very difficult to decipher, I realize, as there are conflicting reports. The end result is that no one test is more definitive or conclusive over another necessarily. False negative PetScans of the brain occur often. Nothing is for sure.

So, we are right back to where we were last week. Waiting to hear from the surgeon. We have an appointment on Thursday if he does not call us prior to that. I am interested to hear whether or not HE thinks it is tumor or radiation effect.

Radiation effect simply does not make sense to me because of how quickly the enhancement occurred, because of how long it has been since surgery (18 months) and because of how large the area is. At this point in time, the enhancement is larger than the area that was radiated. The area that was radiated was small and concise. I told Brian I feel terrible, as though I am resisting what could be good news. When did that happen? He said he agreed. He didn't know how to take this news and was taking it in stride as well. Part of this is because of the problems Brian has had in the last two weeks which coincide with the timing of the growing enhancement.

From two weeks ago, Brian suffers from sporadic headaches which have lessened in the last three days. Also, Brian has been struggling with some thought processing - specifically numbers. His brain knows what he should do, but getting his body to execute it is another story - dialing a phone, basic computer functions, finding a radio station, etc. - it just isn't coming together. Also, his right side is weaker. His speech has deteriorated a bit, but not dramatically. Some moments are worse than others.

All in all, though, Brian continues to do pretty darn good relatively speaking. He refuses to take the elevator or let me get things for him if he is capable. He is in great spirits and I find him smiling often. Just gazing off and smiling. He tells me he is just happy. And yes, this happy is in the middle of assuming he is near death. We openly talk about it now. We openly discuss taking care of issues and ensuring we spend this time doing what he wants to do - what is best for our kids and our families, building memories, making the moment insanely special, and knocking off whatever he wants from his "bucket list." He says he is doing what he would want to do. He is spending time with me, his boys and our families. That is what he wants. And that is what makes him happy. His dignity and character right now speak worlds to the man Brian has always been.

We had a great weekend with Brian's family. We spent time together, enjoying each other and being with each other. It was nice. The first couple days, Brian was plagued with headaches. The last couple of days, you would barely know he was sicker. He spent many hours with his brothers. The boys had sleepovers with Mom and Dad at Grandma and Grandpa's and it was great. They got to see Ziggy the dog which always completes their weekend. It was incredibly enjoyable in between Brian's fatigue, headaches, and issues. We are learning to work around those and be flexible.

Well, I guess, the summary is keep us in your prayers for guidance. Brian and I both thought we were going into this appointment today to discuss that we did NOT want surgery, what chemo we would do next, IF ANY, and what to expect from here. Now, we are ready to discuss another surgery and neither of us know how we feel about it. We could use some wisdom.


Friday, October 24, 2008

Sweating the Small Stuff

Strange. The small things have started to bug me. I don’t get it. It isn’t my small things that bug me, though. It is other people’s small things. And it isn’t exactly their small things, but rather their irritation with small things that bugs me. Because I want to scream and shout that they have it made, so shut the eff up, cut me some slack, and grin and bear it. But the truth is, I don’t know that they have it made. They could be hurting inside the same as I am. They could have suffered a loss recently that puts them over the edge. I don’t know.

Brian’s little brother, Michael and his pregnant wife, Jen, came into town Wednesday. Thursday, as a group, we all went to lunch – those of us that weren’t in school anyway. About ½ hour into lunch at Buffalo Wild Wings, Brian was overcome with an excruciating headache – an occurrence that comes more frequently these days. The headaches come on quickly and can leave just as suddenly. Sometimes they last for ½ hour, other times they plague him for over 3 hours. They are debilitating. They render him unable to cope, to speak, to think and to do just about anything. We are trying everything. The pain seems to be centered more around his eyes – like a sinus headache. We are trying Tylenol, Sudafed, Alka Seltzer cold and Sinus, Nasacort, anti-biotics, extra steroids, and occasionally even Vicodin. The pain is that bad. I have been on the phone with the doctor several times in the last few days trying to determine how to best handle this. I have been to the pharmacy several times picking up different prescriptions and over the counter remedies. I can’t bear to see Brian in such pain.

Speaking of pharmacies and the small things frustrating me I was at our CVS twice yesterday to pick up a prescription the doctors office called in for us only to be told it wasn’t there the first time. After several phone calls, we determined that it was in fact there the entire time. I don’t understand this. And what gets me more is the pharmacy’s lack of assistance. No one offers to call and help determine what is the problem anymore. No one puts forth any extra effort to simply ease the confusion and chaos. It all falls right back on us. It gets old.

Brian’s increased headaches have us very concerned, obviously. We want to control his pain. The oncologist thought the neuro-surgeon would call us yesterday. Rather, the neuro-surgeon’s office made an appointment for a consultation for NEXT THURSDAY. This is beyond unacceptable. The tumor grew 24% in 3 weeks. By the time we would go next THURSDAY, it will have been 2-1/2 weeks since the LAST MRI again. By the time they did anything, it would be the following week and then 3 weeks since the last MRI. And I would call and fight this (again) if we were seriously thinking about surgery. But, I think Brian is done with surgery. He doesn’t want to go through it again. I respect that and honestly, I agree.

Brian has an oncologist appointment on Monday. It was a planned appointment from the last chemo, so we will discuss with him what other chemo we may try next, if Brian wants to do that. Honestly, I can’t tell what he wants to do. Some days I think he just wants to pass peacefully and other days I think he wants to stay and fight. Actually, scratch that, some MOMENTS I think he wants to pass peacefully, and other MOMENTS I think he wants to stay and fight. While my heart is breaking into a million pieces each day, I support him no matter what.

I have spoken with just about everyone that I think is involved in the children’s lives – teachers, church leaders, coaches, bus drivers, their friends’ parents – to give them awareness, to implore their sensitivity and to ensure they help us identify any troubling behavior or emotions. I want to help the kids, but since they spend so much time in other settings these days, I need help. Also, I think it is very important for others to be aware to help watch over my boys. I am doing what I feel is best, but every day I question myself.

This morning, Gavin acted out in a way that I have never seen before. He literally stamped his foot, screamed NO repeatedly at me and almost hit me. He is 7 and this behavior is beyond inappropriate. We have been very bad about sitting down for any sort of an organized family meal these days due to our schedules and our in and out company. The fight was over what he was eating for breakfast. I didn’t feel I was being unreasonable. It was so hard because my punishment for him as his behavior escalated was to take away the Wii we are borrowing for another day. I really thought this would work. We got up to my taking it away for the weekend and his behavior did not change. I didn’t know what to do. By the end of the brawl, I sat down at the table and cried quietly to Brian because I don’t want him to lose the Wii. I want him to have fun with his cousins and aunts and uncles this weekend. I want this to be memorable for all of us. I immediately regretted it, but I also know the importance of follow through. I also know that my boys are tired and sad. They see my cry a lot. They have to be somewhat scared. They are not getting to bed at normal times and it is my fault. Our routine is out of whack. I need to cut them some slack and HELP them vent their emotions in a more appropriate, healthy manner. So, begrudgingly, I spoke with Gavin on the way to the bus stop when we had both calmed down and explained that his behavior was unacceptable. If he is tired or sad or mad, there are better ways to handle it than to be mean to people. But, you know what? They probably are mad at me and Brian. Seriously. Their mom cries a lot. Their Daddy is sick. They are getting off the bus at other people’s houses here and there. They have to be confused and frustrated. I didn’t even go over Gavin’s spelling words this morning. He has a test today. I feel like I fail them a bit more each day and things aren’t even that bad yet.

Yesterday in Wal-mart, I was picking up a few things for the shower this weekend. As I was checking out behind slow, crazy cat-lady with cases of cat food and cases of Kit Kats and stuff under her coat it looked like she was trying to hide, etc, I found myself a bit frustrated at her lack of organization and her lengthy check out. Oh well, I thought, more time with just me and Gavin – trying to be more half full. I bought some ribbon for a shower centerpiece. The ribbon ended up being priced per yard and not per roll, so I had to go back and get different ribbon. I explained that I would be right back and Gavin and I ran back to get the ribbon and ran back to the check out. When I got to the checkout, the cashier had obviously thought I would be a while and had moved all my things off the belt into a cart instead of checking them through. If he had checked them through, I would have been back about the time he was finishing up. Honestly, the entire process probably took me about a minute and 45 seconds, IF THAT. When I got back the guy looked surprised to see me, got the cart and started checking me out again. I looked at the lady behind me, obviously frustrated by her glaring stare, and said, “sorry about that.” She said, “For future reference, next time, you should continue checking out with what you have then, go back into the store to get what you forgot and check out again. That’s what I have done in the past.” I said, “Oh. Sorry again. I wasn’t gone that long.” She said, “There has already been a person that got out of line because of you.” I looked at her and said, “You know what, Mam, I am having a really bad day. I’m sorry I inconvenienced someone for 90 seconds today, but I need some slack. Thanks.” I could feel her glares. I could feel my emotions swelling in my throat. I went to the bags and started loading them in my cart to get away from her. I came back to pay (all about 4-6 feet from the cart and loading area) and she said, “Your day is going to get a lot worse if you leave your wallet unattended like that again.” I was standing 4 effing feet away from my wallet and was simply trying to get my bags into the cart faster to help ease her apparent time constraints. I looked her square in the eye, began to tear up, and said, “It can’t get much than watching my husband die from cancer in front of my eyes each day.” She said, “Oh really, I am sorry,” and she shut up. Gavin looked at me and said, “Mommy, why are you crying? Is it Daddy? Is Daddy going to die while we are at the store? Do we need to get home right now?” I grabbed my receipt, whispered to Gavin that mommy was sorry he had to see her like that, and that Daddy would be fine when we got home and high-tailed it out of there while the cashier compassionately wished me a much better rest of my day.

I felt like an idiot. I trembled the whole way home. I felt like I failed Gavin. I failed myself. I failed Brian. Brian would have reprimanded me if he had seen me behave that way. People are ignorant. We are all selfish and none of us want to be inconvenienced in this day and age. I need to remember that.

I guess my point is that we need to give each other a break. It may be just kind of a crazy, unorganized cat-lady in front of us checking out slowly, but it may be more. It may be someone hurting inside. It may be someone that has a lot on their minds that simply can’t keep their thoughts straight and should have made a better list, but it may be more. It may be that someone forgot something very important and adding 10 minutes onto their grocery trip to wait in line and check out again means 10 less minutes with someone they have limited time with. It may be that little boy in front of you is hiding a fear of losing his daddy behind that big smile and devilish grin. It may be that 5-year-old acting inappropriately for his age is simply trying to figure out how to vent his confusing emotions of pain, fear, anger, sadness and loss and doesn’t know how to do it.

Let’s all give each other some slack.


Wednesday, October 22, 2008

When KEEP BELIEVING begins to take on new meaning

Yesterday, we heard from the tumor board. The board is suspicious that the growth is more likely tumor and not radiation effect due to some characteristics and something about organization and a few other words that may as well have been, and probably were, in LATIN for all I know. What I do know, is that we were not surprised by this news. We have not seen this much growth in such a short time. The Petscan results are not in yet, but honestly, I would be surprised if they showed anything different. I think Brian would, too.

What DID surprise us was that one of the surgeons mentioned another surgery as a potential option. He said that he thought he could get in and debulk the mass without hampering the motor cortex and without causing Brian much problem. Our next step is to have a conversation with this surgeon. What he would want to do first is map the brain and ensure he was not going to touch or hurt any important areas causing Brian further detriment before he attempted to debulk.

There are a few issues with this. First of all, how likely would this surgery be to cause Brian harm? Because we are being faced with a decision – how much of one’s life is one willing to give up for the sake of living longer? Brian lost a lot of function after the last surgery. He doesn’t want to go through that again. And Brian knows that whatever he wants is okay with me. It truly is. Brian doesn’t want to be a burden. I have assured him that he is not a burden and even with further issues, he would not be a burden to me. I would take care of him if this is what he wants. He isn’t sure if this is what he wants because the second issue is that they are unsure how much long term benefit this will have for Brian. With a debulking of the tumor, the surgeon would be unable to get it all. They will never say they got all of a brain tumor due to its “fingers” unseen by even advanced medical equipment. And it appears the tumor is growing regardless. Would debulking provide much benefit and for how long? Is it worth the risk? There is simply no way of knowing if this would keep Brian here longer or how much longer. It is an agonizing decision. A decision for which I believe there is no “right” answer. Simply a personal choice. It is Brian’s choice. I support him no matter what he decides.

So, Brian and I have begun “the talks.” The talks where I assure him I am not afraid of living without him and he assures me he is not afraid of dying. And I really am not afraid of living without him. I am coming to terms with it slowly. I am angry and my faith is faltering and I am heart-broken, but I am not scared. While that could be the pharmaceuticals speaking on my behalf, I believe it is the peace of Jesus within me. And for Brian, he is at peace with dying. He is not happy with the potential timing and the impact it will have on his children, but the actual process of dying isn’t frightening him anymore. Honestly, the talks are liberating. To be able to openly discuss that which lays heavily on our hearts, but that which we feared would break the other person, without that fear is priceless.

His concerns with dying are the following: Most importantly, he says, he doesn’t want me to lose my faith and he knows that many days I am faltering lately. How tragic is it that the one who is facing his mortality every day is the one reassuring the surviving of the grace of God? He says it is very important to him that my faith stay strong so I can continue to pass that on to our boys because it will be easy for them to stray from faith, too. Secondly, the age of our boys. They are simply too young to have a heart to heart with about the things he wants them to get out of life - the things he would teach them throughout their years and in life lessons. He will most likely not be around to instill values and morals in their adolescent years. That is the one thought that brings him to tears. And I don’t know what to say to comfort him. The hard truth is the boys are very young. They will have little memory of these years, but I will try my damnedest to embed these years into their long term psyche. I know anyone that has been touched by Brian will help me do that. They couldn't help BUT do it.

So, don’t get me wrong, Brian is not giving up. He is going to stay the course with speaking with the surgeon first, weighing that option and then trying a new chemo regardless. We have some tough decisions ahead again. Brian wants to continue to live. It is just becoming more apparent that barring a miracle, which we both know could always happen, Brian’s cancer is growing and we have little remaining weapons. Prayer, which is our strongest weapon, will always remain in our arsenal.


Tuesday, October 21, 2008

quick note about Brian

First and foremost, I wanted to say a heartfelt thank you to all the well-wishers for us. We seriously appreciate the kind thoughts, the extra prayers and the sweet words of encouragement. Seriously. Most of the readers of this blog are our family and friends and not other bloggers, so the comment to readership ratio is skewed. You see, my family and friend non-bloggers do not understand that blogging can be an addiction and comments are our crack. So, to see that over 80 people commented to tell us they were thinking and praying for us, is beyond humbling. Thank you. Thank you also to Kristen and PG who directed their readers here for extra luv. Thank you also for understanding that at this point in our lives, I cannot possibly respond to all of you nor check back to your blogs right now. No. My priorities are spending time with Brian and as a family. I know you all understand. Honestly, your thoughts and prayers are working though, as I have felt a renewed vigor to KEEP BELIEVING. Last week, I was honestly ready to give up. It pains me to admit that.

Secondly, Brian is having a PetScan today. This PetScan should be to try to better determine if the 24% growth is tumor or radiation effect. In the end, it will not change the fact that we will discontinue this chemo and go on with a different course. We will speak with the doctor later today and talk about a plan for the next step. We should have called last night, but we had soccer games and it isn't really a great place to have a conversation with the doctor. Plus, what's one more day at this point in time?

The steroids seem to have helped Brian some as his speech improved and his headaches were less over the weekend. We had a great weekend and Brian, as I said yesterday, did just fantastic. I think most people would have had no idea that his test results showed a worsening condition.

The proverbial "one day at a time" saying rings so true for us these days. Usually I want to kick someone in the teeth when they use that line on me followed by a "no shit, sherlock," but these days, that is the best we can do. We take each moment as it comes. Brian is on leave from work now. He is concentrating on himself and staying on this earth for as long as God will allow. He keeps saying, "I'm not done yet." Regardless, each day we analyze how Brian is feeling and what he can handle. For the most part, he has felt pretty good and can handle most of what he was handling recently. His speech issues come and go. He is suddenly tired and needs rest. His headaches are sporadic, but controllable.

I endured the agonizing chore of revealing to our boys their Daddy is getting sicker. Naturally, they met my news with questions regarding Daddy’s death. I explained that we will all die some day, but that Daddy’s sickness is very serious and he might die from it. “Will Jesus heal Daddy?” “What will happen if Daddy dies?” “Can’t Daddy take different medicine?” Those were some of the interrogations I had to field. I answered as truthfully as I could. “Jesus COULD heal Daddy, but I don’t know if he will.” “If Daddy dies, we will be fine. You will be fine. It will be the 3 of us and we will be OKAY. It will be different, but we have lots of people that love us and want to help us.” “Daddy is going to try different medicine, but it might not help. Daddy’s cancer is growing.” “The most important thing you need to know is that Daddy doesn’t WANT to be sick. It isn’t Daddy’s fault, it isn’t YOUR fault – it is NO ONE’s fault.” I don't know if I am handling this appropriately or not. I don't want the children blindsided. I don't want them to be afraid if they see people (me) crying. I want them to feel secure, loved and cared for, and I am doing my best to reassure them of that.

Gavin had a revelation. “I KNOW WHY DADDY IS SICKER! He picked his nose and that makes you sick! No, Mom. Stop laughing. It’s real. When you pick your nose, it gets germs in there and makes you sick. Daddy picked his nose.” So one good thing that could come from this would be that my boys may have better hygiene as someone somewhere along the way has told them this urban myth and I swear it wasn’t me. I reserve my lies for things like – If you don’t eat your vegetables, you will get fat and have no muscles and be the slowest one on the team. Don’t judge me. Shut up.

A few minutes later, Gavin was asking me the whereabouts of our tray we use to take breakfast in bed when people are sick. So, we got down the serving tray and they started loading it with things to take to Daddy. Straws, because according to 7 and 5 year old boys, when you are sick, you have to drink through a straw. Books – but only kid books. I thought the gesture was incredibly sweet and compassionate, and I thought it was important to let them be as much a part of this or as little a part of this as they want.


Monday, October 20, 2008

family photo

I promise to post pictures from our fantabulous weekend in Southeast Missouri with family and friends. I will also recap in that post, but for now, I will tell you that Brian did GREAT. His speech improved and he had minimal and manageable headaches. He had decent energy and strength and everyone was in a great mood.

We took hundreds of photos because I thought it would be nice to get some good photos of Brian with everyone. I really wanted to try to get a good family photo while at Mom's, but the boys were a bit uncooperative. Here is what I have to choose from:


Wednesday, October 15, 2008

MRI results and update on Brian Oct. 15, 2008

We had Brian's MRI results from Tuesday's scan today.

It is with a very heavy and devastated heart that I reveal to you Brian's enhancement grew 24% since the last scan 3 weeks ago.

The doctor will not say for sure that is is tumor growth, but we have never seen this amount of growth in such a short time before. It COULD be radiation change, also, but there is simply NO way of knowing for sure, barring surgery.

Brian is not a good candidate for surgery. The last surgery left Brian with enough deficits and an additional surgery could be even more detrimental.

The board will review Brian's scan on Monday and as a group of specialists come up with a recommendation. Possibly a PETscan to better determine if it is tumor or radiation effects, but in the end it will probably not change much. The oncologist does not think this chemo is serving much purpose anymore. We will probably change chemos in two weeks or so. Brian just received chemo on Monday, so his body has to recover from this last dose. We will call the doctor on Monday evening after the board meeting to determine what to do next.

He is starting a round of steroids today as well to see if that helps. There COULD be some swelling that perhaps doesn't show up on the MRI and the steroids would alleviate the swelling if THAT is what is causing Brian's speech issues.

There is really nothing left for options beyond that at this point in time.

Brian remains in good spirits because beyond his new speech issues (which makes his speech just a LITTLE worse than it was a few weeks ago), he feels the same.

I am a mess, but trying very hard to hold it together. We are making decisions about work now and whether Brian returns or not. I want him home so I can spend as much time with him as possible, but he says when he stays home, he doesn't like how little he does. I told him if he didn't watch his mouth, I would come up with a project. I might even start taking him grocery shopping with me. That'll teach him.

I am going to try to best explain what I can to the boys and their teachers. I have their conferences tomorrow, so it is good timing, if there is such a thing.

We leave tomorrow for a trip to my family in Southeast Missouri. We are going to a winery on Saturday as well and I am hoping for a relaxed weekend.

Next weekend, my sister in law and I are hosting a shower for our other sister in law and Brian's little brother will be in town for that. So, that is also good timing, if there is such a thing.

I will update here as much as I see fit about how we continue to fare. Keep checking if you are interested. Beyond that, I will not be reading your blogs much, if I am a regular at your site now. I want to spend just about every waking and sleeping hour next to my man right now.

Everyone asks what they can do. Pray. Send cards. Pray. Treat us like normal people. Pray. Invite us to do fun things. Pray. Treat Brian like the Brian that doesn't have cancer. Pray. Spend time with us. Pray and ...


Monday, October 13, 2008

what life is really like these days

Last week I wrote about “just life” - what it is like sometimes to just be us and how that doesn’t seem interesting for a blog post these days.

The truth is that “just life” for us is so much more complicated. I have struggled lately with writing anything for fear of writing something less than inspirational or upbeat. The truth is we are beat down. Our “just life” lately consists of wondering day to day what is going on with Brian.

Brian is having some problems. It started with headaches early last week – what he thought were sinus headaches. Excruciating sinus headaches. He took some Z-Pac and felt better about 24 hours later. The next day, the uncomfortable feeling around his sinus passages came back and he was in a lot of discomfort. His speech began to falter as well. He is having a more difficult time speaking the words he wants to say and sometimes coming up with the word at all. He feels pressure in his head and it is causing him issues.

So our “just life” currently entails trying to discern what to do next. Our ‘just life” involves making agonizing decisions about work and what Brian can handle and what is best for him. Our “just life” is full of fear and confusion and despair while trying to do whatever we can for Brian.

Our “just life” consists of an MRI on Tuesday morning at 7:30 and a follow up appointment on Wednesday at 12:15 to try to better determine what may be happening inside Brian’s head.

Our “just life” is also riddled with soccer games and trips to the park and homework and dinner and paying bills and grocery shopping. And it is in times like these that “just life” is such a paradox. While we try to make things normal for our boys as much as we can, it is all I have in me not to scream at the world to please stop for a while. Just stop and let me catch my breath. I don’t want to eat or clean right now or think about the fact that my boys need to eat or take showers. I don’t want to do homework or pay bills or fold laundry. Our life is in limbo and on hold, so why can’t all the auxiliary events around it do the same?

In the next breath, though, it is those stupid, mundane, auxiliary events that keep us sane – that give us some routine and rhythm. Is that why I resent them so much?

The English language through the eyes of a first grader.

In first grade this year, Gavin’s language arts focus recently has been on writing sentences and paragraphs. I love the way he throws spelling and grammar caution to the wind and dives right in. He never asks me to spell anything for him and he just spells it out phonetically.

It makes me realize how messed up our language is. How is anyone supposed to remember all of our exceptions to the rules?

For instance:

Why can we not have 10 vowels instead of 5? This way there would not be any guessing as to whether or not the long or short sound is used and it would make the silent “e” unnecessary. “e” has enough use anyway. Also, there is no use to have 'y' act as a vowel. It has a use already. It doesn’t need dual purpose.

For that matter, “c” has no business using both the hard and soft sounds. We could then eliminate k from the alphabet and we already have “s.” Same things with “g.” We already have a “j.” Where do "c "and "g" get off anyway thinking they need to exert their power over letters that already serve their purpose?

With the new vowel introductions, we would no longer have a need to spell certain vowel sounds with two vowels like “chain” or “weak” It would simply be the new vowel that always has the long A or long E sound.

And how am I supposed to explain to my child that one is different from won yet pronounced the same? and we haven't even ventured into "dear" and "deer" or "their," "there" and "they're." God help me.

And why SHOULDN’T he keep spelling “was” as “wuz”? It makes a lot more sense.

I seriously think we should turn the English language over to the first graders and let them re-develop it.


Wednesday, October 8, 2008

It is just life.

So lately, my kids aren't doing much to give me any blog fodder. Life is relatively boring and routine with soccer, church and housework and I consider that a good thing.
You probably don't want to hear about everyday life with us so I don't write about it.
I feel like you don't care that I re-acquainted myself with a friend recently and found out we have much more in common and a deeper friendship than I had originally thought.

I feel like you don't need to be bothered with pictures from our trip to a local orchard.

I feel like you couldn't possibly care less that the orchard is now surrounded by a windmill farm taking away from its simplistic roots, but somehow giving it a new mystique.

I feel like you don't at all find it interesting that this is the face of my friend after warning her husband not to throw the contents of the garbage can into the bonfire at their home in the country under construction only to be ignored and for the rest of the party to find out that a small compressed gas cylinder used to power a nail gun will first sizzle and scream like a Roman Candle before it explodes like a shotgun shell sending embers flying everywhere.

That's the trashcan in the background JUST before he was cautioned NOT to dump it.

And WHY would you be interested in knowing that on beautiful Fall Saturdays my boys set up little parties in the bed of Daddy's Pick-up for hang-outs with their friends.

And what could be more boring that seeing Gavin wears his chocolate pudding on his face...

And Grant wears his on his sleeve?

Why would you be interested to know all that? It is just life.


Sunday, October 5, 2008

Get Service

We saw this video at church today as a reminder that as Christians, we are constantly wearing a sign on our backs (like it or not) that says "Watch Me" because we have claimed to be Christians.

While the quality and the effects of the video aren't fantastic, the message is great. Please watch to the end.

I hope we can all, Christian or not, remember the message of this video next time someone cuts us off in traffic, someone speaks rudely to us while checking out, someone fails to use common sense and inconveniences us, an elderly person is going to slow for our liking or people are just irritating us in general.


Thursday, October 2, 2008

kids today good they have it

When I was a kid, I remember my parents giving me their sob stories of how good we kids had it these days compared to their lifestyles when they were kids – stories of being raised on a farm doing chores like milking cows and bailing hay and cooking for the entire family and cleaning up and gathering eggs and butchering chickens. When I was a teenager my parents spoke of how spoiled we were and didn’t even realize it because when they were kids they didn’t have their own cars unless they paid for it and they rarely got new clothes and shoes, as they didn’t have the money for it. When I was in college, my parents told us how lucky we were to have parents paying for a college education, and damn right they have every right to expect certain grades and behavior as long as they are paying for it no matter how independent we think we are now, and how many more credit hours were required 25 years ago for the same degree, and how my dad hitchhiked 4 hours back to school, and how they worked in lieu of or while attending college themselves.

And I did like any kid, teenager and college student does. I rolled my eyes, snarled my nose and said something sarcastic.

But you know what? I knew they were right. I knew I had it easy compared to their lives as kids. I really did. I also knew that I didn’t have as much privilege and material things as many of my peers. I struggled with that a bit, but in my head, I knew I still had it good compared to many and especially compared to my parents.

I really didn’t think that there would be too much room for me to have these stories for my kids. Mainly because, I was going to demand many of the same things from my kids as my parents did from me with respect to responsibility, earning my keep, and helping/contributing to the family. But, I can already tell you, I can see how much more spoiled kids are these days than even we were as kids.

Here are some of the things I find myself thinking or saying comparing and contrasting my lifestyle as a kid to theirs. And YES, I realize these are ridiculous.

  1. When I was a baby, we were in an infant seat and car seat until we were 3. Then we crawled around the backseat like it was the cockpit of our private spaceship. I am still alive.

  2. When I was a kid, we had to arrange pick up and drop off places ahead of time. We had to have spare change on hand for an emergency PAY PHONE call just in case. We knew how to call collect if we needed to. All because this little thing called a cell phone did not exist.

  3. When I was a kid, we made it through an ENTIRE SOCCER game without a snack. We even made it all the way home until we could be met with a made from scratch dinner after WE set the table or until we could be met with a healthy snack. Also, we drank WATER, not Gatorade or PowerAde from a plastic bottle, no, WATER from this amazing thing called A THERMOS.

  4. When I was a kid, I did not get a Capri sun in my lunch every day. I was to drink the milk the school provided or I was to drink WATER (from a thermos).

  5. When I was a kid, when we waited for the bus, we actually LEFT OUR HOMES and went to the bus stop. We did not watch from our windows as the bus stopped every 3 houses waiting for poor over-sleeping, cold kids who refuse to wear a coat because they think it makes them look UNCOOL.

  6. When I was a kid, we actually RESPECTED and MINDED our teachers in school because if we got in trouble at school, we were going to get in bigger trouble at home unlike the kids of today whose parents are constantly making excuses for their children’s unacceptable behavior while undermining teachers’ diminishing authority.

  7. When I was a kid, McDonald’s was fun just because. Not just because it had a playland. Playlands did not exist.

  8. When I was a kid, eating out in general was a huge treat. We loved it because it was exciting and different. We behaved at restaurants, too, because WE WERE EXPECTED TO.

  9. When I was a kid, we went outside and played games we invented. We ran and chased and pretended. We didn’t have elaborate play-structures in our backyard and a third garage stall full of nothing but rarely touched children’s toys.

  10. When I was a kid, we watched TV at night with our families to wholesome shows that were not inappropriate for kids under the age of 15 to witness on 1 of 4 network channels. Cable did not exist until I was in late grade school. Even then, there was one kid channel for many years. We didn’t even have a remote control until I was in grade school. Oh yeah, when MTV first came out, they aired really cool things called MUSIC VIDEOS instead of brainwashing liberal media.

  11. When I was a kid, I started out listening to my music on this thing called VINYL until a new technology called CASSETTE took off. Then, when I was in college, I started using CD’s. We had BOOM BOXES and walkmans if we wanted to take our music with us and we didn’t hide behind earbuds when any social situation arose.

  12. When I was a kid, we did this amazing thing with our friends – we TALKED. We didn’t IM or text. If something was urgent, we TALKED WITH URGENCY instead of using all caps or extra exclamation points. We left messages on each other’s locker chalkboards, not on their facebook wall.

  13. When I was a kid, we kept score at our sporting events. We even had a running tally called STANDINGS and the winners were given trophies. Not every kid was given a trophy just because they participated. It did this great thing – it weeded out kids who really didn’t want to be playing and it made it MORE AFFORDABLE. Also it helped us learn at a very young age that sometimes life doesn’t go exactly the way you want it to no matter how hard you try, but you have to keep trying because maybe next time it will.


all images courtesy google images.

Wednesday, October 1, 2008

all 5-1/2 of my shoe size

To all the retailers and manufactures of clothing that continue to downsize or eliminate the petite selection and department in favor of expanded or newly created plus size departments (regular plus, girls plus and now JUNIORS plus):

My 61 inches of height and all 5-1/2 of my shoe sizes would like to formally tell you:


Angie @ KEEP BELIEVING who is being forced to pay full price on line for anything to fit these days.