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.



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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.

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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.

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When you put your friends off long enough....

Lately, Brian has begun to have a few more issues. He is having some memory lapses. He doesn't remember things that have happened in the last couple of days. Then the next day he remembers them and doesn't remember that he didn't remember them and then it all happens again. He has little to no appetite and has been vomiting some more. He is incredibly sleepy. He has almost no energy. He has been having an issue with his hearing in the left ear (side of the tumor) where he will suddenly hear a strange noise, all other noises sound tunnel-like and then he doesn't remember that it happened a few moments later. I am assuming this is seizure-ish activity, but I can't be sure. Are these things related to chemo or are they as a result of cancer progression? We have no idea. He goes back in for the next dose of Avastin on Monday. He has an MRI on Feb 2 with results given to us by the surgeon on Feb 3. He is scheduled for chemo again on Feb 9. We will see how it all goes in the next few weeks.

So things are getting somewhat harder around here. Brian is kind of out of it more. He is walking with a cane, so he lost his only free hand making it difficult to do much of anything around the house, not that he was able to do much anyway. We have had extreme cold and more and more snow, so getting around town is complicated, too.

Also, we are having issues with radiology insurance claims from over a year ago. I have been on the phone a lot trying to handle that. I am now trying to appeal to the radiology practice itself to reduce the claims to a reasonable and customary amount so we can just pay them out of pocket since they have been denied by insurance despite our constant appeals. This one is very frustrating to us. We did not order the tests. They were ordered by specialists in the field. Brian just endured the tests. To have them denied for a reason of "unproven" is beyond frustrating. We would have assumed that if they were ordered by professionals who treat brain tumors for a living they would be "proven." Regardless, I am tired of fighting. I give up. I just pray we can get the amount reduced.

Grant was sick yesterday with a stomach bug. He is fine today.

Many of my friends have asked what they can do. Nothing yet. I really have meant it. Just support and love and company. I DID finally ask a friend to come over and help me clean my house tomorrow. So, today, I have to pick up and organize so they can help me clean, dust, vacuum, empty bedroom garbage, etc. I do need that help. But, mostly, I don't even know what it is that I could use help with.

So, today, at my church Mom's group, my table surprised me with some things. First, one girl came in and said she had dinner for me.

bbq pulled pork on buns, healthy chips and Caribbean Cole Slaw.

Then another girl came in and said she had something for me in her car.

Chicken and Rice with Hawaiian Rolls.

Then another girl asked me when I was leaving because she had a frozen dinner for me in her car.

Lasagna with salad and French Bread

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?

KEEP BELIEVING

winter wimps and some theme songs

As you know, I was lamenting that school was cancelled for Thursday due to cold weather. Well, it is also cancelled for Friday even though the temperatures are supposed to reach about 20 degrees higher than today to a balmy 15 degrees F. However, morning windchills are supposed to hover around -30 again. WIMPS. WINTER WIMPS, I tell ya! This blows my mind. Cold becomes a part of your life in Canada. Today, we managed to make it to a crowded McDonalds and the Hair Cuttery (that is really the name). Yet, it was too cold for my kids to stay inside a warm school??? You will not get me to buy into this, so stop trying (I'm talking to you my fellow Illinoisans). I am calling this entire state a bunch of PANZIES!!! I made it CVS, too, to spend my expiring ExtraCareBucks.

Along with my fellow Illinois wimps who can't handle the cold, I would also like to call out a few inanimate objects. Namely our truck who I am pretty sure cursed me for leaving him out for a few hours last night while I freed up the garage for Brian's easier transportation. But, he started, so I forgive him. Also, our van whose windshield wiper fluid is frozen solid and whose power doors will not slide in the cold. I am not afraid of you van! I still can use my hands and open and close doors. Also, my garage door who will not open and shut for me when the temperature gets below a certain temp, as well. Once again, I am not afraid of you, either. I can pull your emergency release cord and use my hands. I'm not afraid to live like our forefathers.

Last evening, we went with Brian's brother and wife to see Spamalot. Brian and I also saw this November 2007 in London. Nothing compares to seeing this British comedy in BRITAIN. One of my fondest memories of our 9 day trip to Europe was the night we went to this show. However, Brian and I have a pretty warped sense of humor and we love the Monty Python humor. Also, Spamalot has some good songs that we should all apply to life. They are songs that seem to fit the way Brian lives every day and we have decided some of these are basically his theme songs:

Always Look On The Bright Side Of Life

In addition, a little less applicable to most of the world, but in keeping with our warped sense of humor, we like this one for Brian:

Not Dead Yet

Yes, we find things like this funny. We laugh our way through the day as much as possible. We have to. It keeps us sane.

I leave you today with a few memories of our trip to London, November of 2007, and our night out to see Spamalot including picture of us riding the escalators for London's wonderfully easy to navigate TUBE.

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snow cold day....?

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.

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