- If you bring a meal, disposable dishes are most appreciated. OR please be willing to come back and get your plate - forgiving me if it is not clean when you arrive.
- I don't care about brands on anything unless I specify.
- I do not use any particular brand of laundry detergent - whatever is on sale.
- If we are not home at the time you came for whatever reason right now, it is cool enough to leave just about anything outside for a while. I check the front porch frequently as I find treasure there from little angels frequently.
- Be patient with me and thank yous. I am historically bad at this and right now, I am scatter-brained. Please give your information to Karye so I can thank you properly, though,
Wednesday, January 28, 2009
Tuesday, January 27, 2009
I have had a bad day. Well ever since the hospice social worker was here and mentioned the word.... funeral...
I can't get past it.
I am tired.
I am weak.
I am sad.
I am overwhelmed.
I am scared.
I need a little break.
I will write the post on what people can do for us and who to contact tomorrow.
Monday, January 26, 2009
I am dedicating this post today to tell you how Brian is doing, how I am doing and how the boys are doing - emotionally and physically, since I think I have made it pretty clear that spiritually we are doing well.
Brian has had a great last few days physically. He hasn't slept much during the day. Cognitively, he is very "with it" and is remembering a lot more than he was early last week. He still has some issues with suddenly thinking an event that happened many years ago was very recent, or not remembering something that just happened, but only once or twice in any given day. Physically, Friday and Saturday, he was great. He had energy and maneuvered the stairs with confidence. He has not fallen since I last wrote about it on Wednesday. However, on Sunday, he said he felt his right hand and arm starting to get weaker. Still, he managed to get up, shower, get dressed (with a little help), eat a small breakfast, go to church, and then GO OUT TO LUNCH with some of our friends. It was such a successful day. He took a nap yesterday afternoon, but honestly, that is to be expected. He has had several phone conversations with friends and family. His speech is faltering and struggling, but he is able to eek out a conversation.
He is eating very little. He says food doesn't taste the same. He does eat some, though. He has lost around 8 pounds in the last few weeks. But don't worry, I am making up for it. Wait, on second thought, worry about it.
Emotionally, Brian is coming along. Friday evening and Saturday, most of the day, he was pissed. He had pursed lips and just kind of bounced his leg most of the day. He says he feels strong enough to keep fighting. Why not just try chemo again to see if it holds things off for longer? If he felt terrible, he could easier accept and stop fighting. So, I have explained to him that from the time of the CT Scan to the MRI, in just two weeks, the cancer popped up everywhere. It is in the leptomeninges, cerebellum bilaterally (both sides), brainstem and visible spinal cord on the MRI of the head. In hind sight, the symptoms he was having in October with the ventricles filling up and not draining was probably the beginning of this progression. The symptoms he had in December with the sudden vomiting and balance were signs of the worsening of this condition. The most recent scan simply confirms it. I ask him, "Why would we take more medicine that makes you weak and tired if it isn't helping?"
This conversation kills me. I feel like I am telling Brian to give up, like I am crushing his spirit and optimism. This man who has so courageously battled and so optimistically confronted every obstacle in front of him is now being told by one who has stood by him through every single moment of it all in the last 11 years that it is time to be done. MEDICALLY. I told him if he wants to keep fighting, then we turn all that energy and attitude directly to his spiritual healing. We give it all to Jesus. He says that is a given. He always gives it to Jesus. He is having a hard time not doing anything else medically.
Over the last few days, he is coming to terms with it. He is less angry. He does not sulk or become withdrawn. He is the same Brian as always.
Gavin and Grant:
I think they are okay. I have explained that the doctors said they don't think Daddy is getting any better and there is no more medicine to help Daddy's cancer. They ask me if Daddy is going to die. I explain that yes, Daddy is probably going to die. Naturally, to a 5 and 7 year old, there is no concept of process. When they pick up a golf club, they think they are going to get a hole in one each time rather than understanding things are gradual. They then ask me if Daddy is dead in the other room. "Mom, check on Daddy. He might not be sleeping. Maybe he died." They have questions about what Daddy will look like when he is dead, " Will we see blood? Will we see his bones?" I explain that no, it will not be like Star Wars or Pirates. Daddy will become more sleepy and then he will get sicker until he stops breathing and then he will drift off to Jesus. There will be no blood or bones or oozing.
I spend a lot of time reassuring them and confirming their emotions. Whenever we talk or they have questions, I tell them it is okay to be sad or mad or scared. Mommy is a little of all those, too, but we will be okay. The most important things is that Daddy loves and trusts Jesus, so he will go to Heaven to be with Him. We will go there some day if we believe the same things, but we have to stay here on Earth until Jesus thinks it is time for us. We have to spend a lot of time with Daddy making sure he knows we love him and doing fun things with Daddy.
I have explained that we will have lots of help from their grandparents, friends, aunts, uncles, and cousins after Daddy dies and while he is sick. There will be lots of people calling and visiting because everyone wants to see Daddy. So many people know and love Daddy and want to spend time with him. They will see nurses coming in and out of the house and there may be more things daddy needs to help him move - like the wheelchair, a hospital bed, a stair lift, etc. If they ever need to talk about any of it, they can talk to me or Daddy or anyone they know and love. Or if they want to talk to someone else who can help them, I can find them someone.
Grant and Gavin sometimes tell their friends. I make sure I tell their friends' parents if they play with them on a regular basis. Their friends think it sounds kind of neat. They will say things like, "Then I will come down lots more and play with you so you won't be sad." At times like that, I am grateful that they cannot currently comprehend the magnitude of this loss in their lives.
Sometimes they cry. I have found Grant hiding under a blanket sobbing, but trying not to, that he doesn't want daddy to die. I just pick him up and hold him and cry with him telling him, I know. It is okay to be sad. It is okay to be mad. I have found Gavin in similar situations. I just put him on my lap, stroke his hair, and tell him, I know. It is okay to be sad. I am sad, too. So is Daddy. It isn't anyone's fault. Gavin said, "It's the stupid devil's." He knows he is allowed to say the word stupid in connection with the devil, so he will say it again and again. I feel like screaming a few 4- letter words here and there, so I figure he needs an outlet.
Grant is confused about illness in this house. When Daddy is sick, he gets lots of attention and the mood changes. The kids notice this, especially Grant, being home after his half day of school with Daddy and Mommy every afternoon. He will suddenly get headaches when Daddy isn't feeling well and need to be held or need to watch a movie. Sometimes he needs ice cream. Sometimes he gets those things, sometimes he doesn't. I know it is confusing for him. I tell him Daddy doesn't want to be sick. I sure don't want any of them sick. I would rather play a game with him if he feels good. Sometimes it works. Sometimes it doesn't.
Otherwise, they are going on pretty normally. They are playing with friends, watching TV, doing homework, eating, wrestling, whining, fighting, etc. I am just trying to help them stay and feel normal in any areas I can.
Honestly, I am doing well with a few exceptions. I don't really know how well I am sleeping. I feel pretty tired a lot of the day, so I think I am tossing and turning. Don't offer me aide on which sleep aid to take. I won't take it. They make me a walking zombie and I need to be able to take care of any issues that may arise in the course of a night. We have relatives coming into town this weekend, so I may take a sleep aid or just sleep in one day this weekend. My neck and my shoulders feel as though they are trying to hold up a 50 pound sack of flour or something. They hurt all the time. I had a massage on Friday, but it did little good to help ease the tension in my neck and shoulders. Any tips?
I have an unbelievable outpouring of support. Tomorrow, I plan on writing to tell any of you that are local or long-distance what we need, what you can do and what we don't need and what we would rather you NOT do. Not so sound ungrateful, but I know many want to help. There is only so much help one family can accept, though
I have contacted hospice. They admitted us this weekend which gives me much relief that if Brian were to take a sudden turn for the worse, I know who to call and what to do. The hospice contact was difficult for Brian. Since he feels good physically, he feels like people are giving up on him. I said, I have to have these resources here more as a "just in case." I didn't know what valuable resources hospice provides from a social aspect - counseling, advice, materials for the children. I am so glad I contacted them and can't wait to get more help with the children.
I am on a roller coaster. I don't think I am in denial. I am more in survival mode. One minute I am so grateful for the many blessings God has granted us with our lives and our children, and the next minute I break down and cry uncontrollably. One minute, Brian and I laugh and joke, the next minute I lay my head in his lap and sob about the unfairness. One minute I look at him and breathe in every square inch of Brian, the next minute I can't stop the tears from coming wondering when the last time he strokes me hair may be. I think these are normal when someone is dealing with a terminal loved one???
Neither Brian nor I are happy with how we are spending our time. I have been spending a lot of time on the computer reading emails and comments and writing blog posts. He has been watching a lot of TV and the boys are kind of just doing their thing. We want to do more together, to make these moments more impactful. We are going to do more to turn off the TV at night and play more board games and read more books together. We have to give the kids their normalcy, too, so it is a difficult things to balance. We don't want to shove memories down their throats. We want them to be memories that happen naturally. Yet, we know our time is likely limited so some things will be more forced.
That about sums it up. All in all, we are all gradually coming together. We are growing. We are grieving. We are accepting. We are praying. We are learning. We are bonding. We are loving. We are living.
Mostly though we....
Sunday, January 25, 2009
Over the course of the last 3 weeks, our church has been participating in a fast. Many of the girls from my church group (for which we are still trying to come up with a clever name) and family, fasted on our behalf.
Here is what I fasted for: Brian's healing and our future provision.
Admittedly, I am not a good faster. One reason being, sometimes fasting makes me crabby. I made up my own fast from a few things from which I truly sacrificed for the first two weeks, but didn't stick to it the last week - AT ALL. Being the primary caregiver and knowing that I am the sole driver, etc. in my family, I felt it very important to take care of myself. Let's face it, though, that is a feeble excuse. I can justify myself all I want, but we all know that God would sustain me if I was doing something for His glory - to bring myself closer to Him.
Do I blame what has transpired over the last week to my failed fast? N-O! Not at all.
Do I think fasts are worthless for those that did fast on our behalf after the events that have transpired over the last week? N-O! Not at all.
I want my friends and family that were successful in their fasts on our behalf to know that I truly believe your fast was effective. While, we are not seeing a physical healing in Brian right now, we are seeing an emotional and spiritual culmination that transcends logic. Here is what I mean:
The first week of the fast, we received SEVERAL DIRECT ANSWERED PRAYERS. Please go back and read those to feel encouraged about our cause.
Right now, Brian feels better today than he has in over a week. While this makes it difficult to accept what is occurring inside his brain, it makes our time together extraordinary. We are capable of discussing things. He is remembering and comprehending just about everything.
Brian is not afraid of death. I have asked him many times, so we can pray about this and work through it. When I ask him, the answer without hesitation or thinking, is, "No." Just NO! I told him, "Then you win, Baby, YOU WIN."
Brian and I have discussed that right now he can be an amazing testimony to his boys about death. In the end, we are all departing this earth some day. Brian has attacked every obstacle that has ever come his way with dignity and courage. Death is no exception. What we can teach our boys in how we handle this is something that I believe will have a greater impact on them than just about anything they will ever experience.
The peace we are experiencing is overwhelming, serene, and illogical. Healing is not always physical.
Saturday, January 24, 2009
I keep clicking on and opening my own blog. Over a hundred times a day. I don't know why. Yes, I read the comments. I take them in and savor them. I read every single one and every single email that comes. I can't tell you how much they mean to me.
But the reason I keep reading is more this time.
I had been dreading the day I may have to write that post - the one that tested my very core and inner faith. The one that I knew would make some that have believed in our story and our plight for so long doubt themselves and their God. The one I knew would make nay-sayers smug - saying where is your God now? I prayed for God to give me the words to make an impact.
Yet, I am profoundly disappointed at my own words. My lack of creativity. The void of almost anything spiritual. The absence of that which is inspirational.
Still, I keep reading it over and over.
As if I keep reading it , then somehow circumstances will change.
As if I keep reading it , then somehow time will stand still.
As if I keep reading it , then somehow things will not progress.
As if I keep reading it , then somehow this would no longer be our lives we are living, but someone else's for which we are empathetic.
This is our life. I don't want it. It doesn't matter. This is our life. My future is disappearing before my eyes. My dreams are dying slowly each day. I do not get to grow old with my husband. I am about to enter single-motherhood. I have to worry about how we are going to get by. I have to figure out how to make things stable and secure for my boys in the aftermath of losing the person that is supposed to protect them the most.
And none of it is my choice.
Yet, I continue to go back to my own words: "..finding peace in the last 11 years of our struggles has always been a choice. It is a conscious effort on both our parts...We are not defined by our circumstances in life. Peace comes from how we choose to respond to our circumstances. There is nothing any of us could do to honor God more than to handle our circumstances with the utmost dignity and Christ-like character possible. I look at Brian’s attitude and the choices he has made over the last 11 years, and I see nothing more God-honoring than that. "
I have a choice now. My choice is to seek the peace that surpasses all understanding. Because there is no logic. There is no understanding this.
Friday, January 23, 2009
Sorry for the lack of creativity in the post title.
We had the results of the MRI from yesterday read to us today. The news was pretty much devastating. The tumor in Brian's head has ALSO become a leptomeningeal tumor and I looked for a good google link for you, but couldn't find one. The leptomeninges work to move the spinal fluid all over the brain and spinal cord. There was particular concern involving the brain stem. Whatever. Go research if you want to. I tired of it after 10 minutes. The primary site of the tumor is also growing. So, educating myself further at this point in time is the last thing I want to do.
What it means is this:
The tumor is growing and spreading and the latest chemo isn't working either. It is time to be done.
Brian didn't "get it" as we were leaving the doctor's office. He was trying to schedule his next appointment and treatment.
I had to explain to him in the car and again at home that the tumor is growing and there is nothing left to do.
He said, he can't do that. He can't do nothing.
I said, Brian, there are no chemos left to try for the stage that your cancer is in. There is no treatment left that is going to take away the cancer that is now spreading into new areas of your brain and possibly your spine.
He said his symptoms weren't that bad to just do nothing. There has to be something else.
I then explained that his symptoms HAVE gotten worse in the last few weeks. I told him he isn't remembering things. He is falling. He is unsteady on his feet. His right hand and arm hang basically limp. His symptoms are worse and when combined with these results, it is time to say enough is enough.
I said I don't know what else there is to do unless you want to try somewhere else in the country with another specialist, but that would require travel which you are not up for and we would most likely get the same response. Brian, the cancer is growing in your brain. Why would you keep trying chemotherapy when it isn't working? Why keep putting it into your body when it grows anyway?
He is mad. Well, A little pissed, he says.
I will tell the boys this weekend, but they know. Anyone who has seen Brian over the last two weeks knows or knew.... except Brian.
I have made the first step for Hospice contact. They are supposed to contact me within a day or two.
I am going to turn over scheduling of meals and cleaning, rides for the kids, playdates, etc. to some friends and/or family. Just give me the weekend to think it through.
The good news is that Brian has not vomited since Wednesday afternoon. We tried a different drug, but it could also be the chemo leaving his system.
So, that is it. We are done. Brian is dying. Maybe weeks. Maybe more. Maybe less. We don't know.
Pray for our peace.
Pray for our acceptance.
Pray that Brian and I can change our conversations more and more about coming to Jesus than fighting to live.
Pray for our boys.
I will keep you posted on how Brian is doing as much as possible. I plan on spending just about every waking moment with him making it beautiful.
If anyone wants to visit us, let me know. Ed and Jan have lots of room. We have lots of room. We don't know how fast Brian will decline.
KEEP BELIEVING with a focus shift to the afterlife.
Thursday, January 22, 2009
Wednesday, January 21, 2009
Brian spent the entire day yesterday vomiting. Within one hour of eating absolutely EVERYTHING he ingested found its way back out the way it entered until about 5:00 this evening. I called the doc yesterday hoping they would simply give him an IV anti-nausea boost or check his electrolytes for dehydration. Unfortunately, they decided to have us come in for labs and an appointment with the Nurse Practitioner.
Now, no offense whatsoever to nurse practitioners out there, but we are a bit beyond this. Brian's cancer is well-advanced. We have been dealing with the same worsening conditions for 2 years now. We have been dealing with this brain cancer for nearly 12 years. For us to sit down with a nurse to tell her the symptoms is a waste of our time. I knew what would happen. We would see this nurse, repeat our story, state our case, she would have to consult with the doctor because she is baffled at the vomiting (as were the oncologist and the neuro-surgeon a couple weeks ago), she would come back with a recommendation from the doctor (who has time to talk to her, but didn't have an available appointment time for us to bypass this stupid process), field our questions, ask the doctor again and get back to us again.
And, not to repeat myself, but that is precisely what happened. Read above to see how our appointment went today. Moment by moment. Only it transpired over two f@#$ing hours. TWO HOURS we were there from lab draw to the time we walked out. And I should have insisted we see the doc, but I am becoming worn down from all this and I just bend over and then come home and cry. Or cry in the doctor's office. Or cry in the car. Or all of the above.
Anyway, I also explained about the issues Brian is having with confusion and memory. He is also a bit more unstable. Part of this is that he is incredibly weak from not keeping anything with nourishment in him for 2 days. His labs were all fine, though. So, she relayed this information to the doctor and he ordered the MRI for tomorrow, January 22 at 10:00 am. We will have those results regurgitated to us on Friday. So this means that by the end of the day on Friday, Brian will have been in the Cancer Center for an appointment or labs 5 times, at the hospital for tests 2 times, and met with the surgeon once- all since January 5. So forgive me if I get a bit crabby at this process. I think this is a world record for reaching our out of pocket maximum with our insurance. PLUS, I am sick of rearranging lives, appointments, babysitting and anything else every time I turn around. SICK OF IT ALL!!!!!!! And that is with people around me making it easy to handle. I feel for anyone who is doing this on their own. YIKES!
Anyway, Brian's confusion and memory and instability are more concerning to them than the vomiting. So, we left with the nausea basically unaddressed (surprise, surprise - 3rd visit for this reason and nothing comes of it, yet we waste our time going in over and over again). Regardless, the MRI is scheduled for tomorrow to see if the tumor is growing and if there is any swelling associated with it causing Brian's issues. If it is, I don't even venture to guess what we will do, if anything, except start back on steroids to help with the swelling.
To explain Brian's memory and confusion issues, I would use the analogy of Alzheimer's. Not that I have any experience with that disease, but what he is going through is somewhat like you see on TV. He forgets things that have recently happened or why we are going somewhere or where we are going while we are in the car, then he kind of snaps out of it and doesn't remember that he was having issues. He is hearing strange things in his left ear sometimes. Then he doesn't remember that he had a hearing issue. I have to remind him of things many times a day and he will have no idea what I am talking about each time. Then, suddenly he will ask me why I keep repeating things to him. But, he is nice about it and he smiles a lot and is in a good mood about it all. It is more me right now that is having a hard time keeping it all together.
Today, two girlfriends came by to help me clean the house. Thank God. My house is cleaned top to bottom thanks to their help. Bed linens are clean and tomorrow I can concentrate more on clothing laundry. I think Wednesday is becoming my designated cleaning day and I have another friend offering to come help me next week. Pending on how the tests results go on Friday, I may request even more help in this arena. We will see.
I am set up as far as food goes for a while, thanks to my home-girls!
Also, the shoveling of the driveway by my neighbors has been a godsend. I have to keep that very free of snow and ice as Brian is becoming more of a fall hazard. He fell in the garage today getting into the car. I couldn't help him up, so I had to get a retired neighbor to help us. He gladly did so. I begged Brian and even had to throw in some tears to use a wheelchair at the cancer center. I asked him to do it for me, not himself. I can't bear to pick him off the ground again.
I have some other issues I may need some help with regarding automobiles, registration and service, etc. I am waiting to see what happens Friday. Right now I just want to spend time with Brian. All he does is watch TV all day. I can do that with him. I was doing it well right before the holidays. I haven't done it much since the first of the year, but I feel pretty confident that if I get some relief with the household stuff, I can do that very well.
Tuesday, January 20, 2009
Then another girl came in and said she had something for me in her car.
Chicken and Rice with Hawaiian Rolls.
Then one more girl asked me when I was leaving because she had just a "few" breakfast items for me in her car to help with the mornings.
blueberries, strawberries, cantaloupe, bagels, 30 small boxes of cereal, 24 cookies, 15 double packages of muffins, 12 breakfast biscuit sandwiches, 10 coffee cakes, 6 English muffins, 6 bagels, 1 bottle of wine, and a partridge in a pear tree (only not really.)
My favorite part: the bottle of wine since the theme of these "few" items is to help with the mornings. Now, THAT is a good friend!
Aren't these girls beautiful? Inside and Out?
Thursday, January 15, 2009
Wednesday, January 14, 2009
School is cancelled for Thursday. It is a snow day, but in reality, it is being cancelled due to COLD? What the..? With many other modern inventions came these things called HEAT and GLOVES and BOOTS and HATS. Heaven forbid the children wait 8 freaking minutes in a windchill approaching -30. Did I mention that we lived in Canada for 2 years? We saw people jogging when the temperature was -20 (without windchill). My kids played outdoor hockey when it was -10. Mothers would walk their babies when it was 0. School kids go outside and play for recess until the windchill reaches -5. We waited for the bus many a time with temperatures WITHOUT WINDCHILL at -40 (fun fact -40F=-40C) We CANCEL school here because of a windchill??? Our school district is a rather affluent one. There are not many walkers. I would venture to guess there are no children who cannot afford or do not own adequate cold weather protection. Get on the bus. Go in the building. Learn. Stay inside for recess, make up for Wednesday's LEGITIMATE snow day.
You wouldn't believe how nearly this entire city is shut down for Thursday. We act like we are incapable of functioning because what? it's COLD outside? Geez Louise. Something tells me Chuck E Cheese's will be open Thursday. Something else tells me it will be a packed madhouse. If we are capable of getting out to the movies or Chuck E Cheese's, WHY are we not capable of having school????
Maybe I am just mad because my style is being cramped a bit. I still have errands to run. My CVS Extracare bucks expire tomorrow.
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.....
Monday, January 12, 2009
You know those birthdays that were big deals -
Dad's favorite Christmas present. "F-r-a-g-i-l-e . Huh, Must be Italian."
Sunday, January 11, 2009
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.
Friday, January 9, 2009
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.
Wednesday, January 7, 2009
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.
Tuesday, January 6, 2009
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.
Monday, January 5, 2009
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.
Sunday, January 4, 2009
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.