What you can do for us

I would like to start this post off by saying, WOW!!!

As you may or may not know, Brian and I come from large families. Between the two of us, we have over 50 first cousins. FIRST COUSINS. We have over 30 aunts and uncles. We have cousins with kids and kids of cousins with kids. We have friends from all over the country and beyond (eh?). We have a large church. We have groups within our church. We have amazing neighbors. We have co-workers. We are blessed with PEOPLE in our lives. Then there is this whole thing called the BLOGGING world. There are real people I have never met that read this blog and people that we have not seen in years that read this blog. I didn't know the extent of this until just this week. I mean, I knew, but I didn't KNOW, you know?

And everyone wants to know what, if anything, they can do for us. WOW!!!

I am getting bombarded with phone calls, emails, texts, facebook messages, comments, etc. asking what anyone can do.

I am coming to a place in my life that I realize people WANT to do. My mom has told me that if I do not let people DO for me, I rob them of the joy they receive from DOING. So, I am learning to accept help. I am learning that I can ease my burden when I allow others to enter my life and do something that makes them feel good.

In order to help with this difficult time, there are several avenues that anyone can take. Please, PLEASE do not take this as a solicitation for ANYTHING. This is actually very awkward and uncomfortable for me.

Practical:

Brian's first cousin Karye Setterlund has agreed to be a contact point for all things practical - meals, errands, groceries, insurance, cleaning, etc.

Here is her contact information if you are interested in helping in any of these areas:

Karye Setterlund

karyes@cmcousa.com

309-691-6930 (home)

309-922-9239 (cell)

I am keeping in close contact with her as needed each day as far as what meals we need (none right now) rides for the kids, groceries, errands, etc. This will ease my phone burden which is heavy some days.

A few tips, though:

• 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,

Encouragement:

Please know that I am reading the comments. Every last one of them. Sometimes I have time to reply. Sometimes I do not. I am trying, but some days it is overwhelming. The emails coming in for me to relay to Brian - I have to admit - do not always get relayed. I get distracted. I read them, but then delete them to keep the inbox clean and forget the details. If anyone wants to send Brian a specific note, please feel free to email this account we have set up:

brianoneill1972@yahoo.com

Brian's brother, Sean is going to monitor it regularly, print out any and all notes for Brian and bring them to us. A hard copy is still best for ensuring we read these wonderful words together. Or if you would rather send us an actual card or letter, please feel free. You can email the above address and Sean can get your our address or you can email me and I can do it if you don't have it. Every time we get a letter from someone that describes how Brian touched their lives, I see him shrug - like what did I do? I am just being me. I have told him the amount of people he has impacted has surprised even me who knows and understands how amazing he is.

You can continue to send me emails and comments for encouragement. I also facebook (Angie Baer O'Neill) if you are looking for me there. I read every single letter, etc. from everyone. I have to tell you I find great comfort in hearing from other widows. It is strange, but it lets me know that I can do it. That the boys and I will and can be okay. They are also incredibly honest. Something I strive to be. I don't want anything sugar coated.

THE KIDS:

I am trying to keep things as normal for the kids as possible right now. I do not want to shower them with gifts and sweets and other things to ease the pain as I do not want them learning to turn to such things for comfort. I want them to face their fears and grief, address them and work through them with me or whomever else can help them. This is NOT to say that an occasional pack of gum, action figure, video game, trip to the Spotted Cow or a movie isn't a nice gesture. I just don't want it to get overwhelming and I don't want to draw more attention to them than already is. Playdates are good. Letting kids come here on good days keeps things normal for them so they feel comfortable in their own house and letting them know our house is open to friends is important to me. Some days, though, they just need to get out - to get away from the visitors and the hub-bub. Grant is home every afternoon at 11:00, so I think I am going to try to set up once or twice a week playdates with friends and cousins (hello Brody) to give him something else to focus on.

Financial:

Please, PLEASE do not take this as a solicitation for ANYTHING. This is actually very awkward and uncomfortable for me, but many of you have asked.

I am in the process of establishing some sort of a fund/trust in Brian's name. I am meeting with a friend/advisor to assist with this on Friday. The fund would be used primarily to help with the children's education and well-being including medical and dental coverage, etc that we will lose in the event of Brian's death. For those of you who don't know, Brian was diagnosed with this disease only one month after we were married, so we have only the life insurance available through his work. Brian and I are very smart and frugal with our money. We live within our means and do not do anything extravagant. This fund would simply allow us to continue to do that for as long as necessary until I could find the right job or pursue the best avenue for employment that is best for the children and me in the event of Brian's death.

My main goal is to keep things stable and secure for the kids. I do not want to make any rash decisions about jobs and moving out of panic. The economy is not the best right now. I would never allow the children to lose this house and our livelihood. I would do whatever it took to maintain that. The generosity that many of you have already bestowed upon us is helping that to be a reality without drastic measure. Mind you, though, I would take drastic measures if need be. However, I know that for the next X number of months or years, my boys will need me. They will benefit from the security of my being the one to get them to school and get them home from school. They will be dealing with not having a daddy around to play sports with and to read to them and to watch them when they learn a new trick or score a goal or catch a fly ball. This breaks my heart and I know it will be painful to them as other dads are helping coach, practicing with their kids, assisting with homework, or simply cheering on the sideline. I want to fill as many gaps as I can, especially in the near term if possible.

I would also like to be able to do charitable things in Brian's name and memory if God allows. We have been blessed a couple times by such organizations and nothing would give Brian more pleasure than being able to bless someone else in our situation some day.

So once again, PLEASE DO NOT THINK I AM ASKING FOR FINANCIAL ASSISTANCE. Nothing could be further from the truth. Some have told me they have prayed specifically about this and as awkward as it is for both of us, who are we to deny God's nudging? I prayed for financial provision. I didn't pray for it to be anonymous. I should have been more specific. I think God is trying to teach me something about humbleness and gratitude.

I have to say it again - PLEASE DO NOT TAKE THIS AS A SOLICITATION FOR FINANCIAL ASSISTANCE. PLEASE! Economic times are rough. We are currently blessed. There are many blessing us each day as I write this now. There are many who do not have what we have now, and who will never have what we will continue to have even when Brian does pass. So, I can't shake the guilt of this regardless. Please know, though, that should you feel lead in this way, integrity is not something I would ever compromise in any aspect of my life - financial included. Does that make sense?

Karye is the contact for this as well.

Whew, I said it..... And I lived.... Okay....Breathe....

Visits/Phone calls:

There are so many that want to visit, see or talk to Brian. This is to be expected and we encourage it. You read above that we have large families, so crowds to us are nothing new. Due to this, though, we cannot guarantee that there may not be someone else here when any one person or group is visiting with Brian or me. I like people. I need people, family and friends surrounding me and supporting me. They distract me, make me laugh, comfort me when I cry and fill the gap when I can't make it across the gorge. Please know that if the visits are too much, I WILL SAY SO, so don't feel like you are over-imposing. I will be honest. I will do what is best for Brian, the kids and me. In saying that, though, we have a two story and a basement. If the best thing for Brian is quiet and solitude, but not for me, I can still have visitors retreat with me to the dungeon. I am learning that this process is not just about Brian. It is about all of us.

Okay, back to the point. I will still be the contact person for visits for Brian. Please don't feel like you are overwhelming me right now. Visits during the day are pretty good actually, as Gavin is at school and Brian is more alert. Monday and Tuesday evenings are not good as we have soccer. Any other evening is doable, but we will not overdo this because it also can cut into our family time that we are cherishing right now.

I know weekends are best for many due to work, travel, etc. So, PLEASE DO NOT FEEL LIKE YOU CAN'T COME OVER FOR A VISIT IF SOMEONE ELSE IS HERE. We do not know how much time Brian has remaining and weekends are the only option for many. That is just the way it is. If anyone is uncomfortable with that, just know it isn't coming from us.

AND I WILL SAY ENOUGH IF I FEEL IT IS ENOUGH. I am being honest. I told my girlfriend the other day that I needed her gone by 1:30 because hospice was coming for the first time. I hated saying goodbye to her, but I had to do it. I told some friends the other day that I needed them gone by 12:30. It was hard, but not as hard as the first time. I called a friend and cancelled a dinner plan tomorrow night because I have felt overwhelmed this week. It wasn't THAT BAD. I told my MIL I wanted her to come at 10:00 tomorrow so I could have the majority of the day to myself since Grant has a playdate. It felt good. So, really, I will say enough is enough. I am getting good at it.

Best hours for a visit:

10:00am to 3:00pm

not good: Monday and Tuesday evenings.

Other decent times:

weekends, evenings 4-7 W-F.

Best hours for phone calls:

10:00-4:00 Mon-Tues

10:00 - 7:00 Wed - Sunday

Brian is a man of few words right now. He is having some speech issues so I try to help out as much as possible, but most phone conversations are brief.

That about sums it up. I feel like a pushy, bossy, demanding little thing, but I think this is what people were looking for. If I offended anyone, I didn't mean to, but I can't apologize right now.

KEEP BELIEVING

Bad Day

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.

KEEP BELIEVING

How we are doing - Jan 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 -
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.

ME
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....
KEEP BELIEVING

When a fast appears to be unsuccessful...

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.

KEEP BELIEVING

As if I keep reading it, then somehow....

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.



KEEP BELIEVING

The worst results ever

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.

This heart-breaking moment brought to you by...

This one courtesy of GRANT:

On the way to Gavin's soccer game the other night.

Grant: Mom, I wish I was super strong.

Me: You do?

Grant: Yeah. It would be so cool if I was so strong that I could, like, pick up Daddy.

Me: Yeah, that would be cool. You would be strong if you could do that.

Grant: Yeah, then I could lift him over the snow and ice and he would be able to come to our soccer games.

The boys play soccer in an indoor facility, but the parking lot is snow-packed gravel, and the sidewalk is always snow-packed and icy. Brian hasn't been to one of their games since early December.

---------------------------------------

This one brought to you by BRIAN;

After relating the above story to him,

Brian: What do you mean? I go to their soccer games.

Me: No, honey. Remember the walk getting up to the complex is so full of snow and ice we decided it wasn't worth the risk of your falling? You haven't been to a game in over a month.

Brian: Really? I thought I had. Are you sure?

Me: Yeah, but it's no big deal. They don't really pay that close attention to who is there once they start anyway.

KEEP BELIEVING

more tests

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.

KEEP BELIEVING