our loss

For those of you who have not heard, Brian passed on yesterday evening. We are grieving deeply and missing him terribly.

Love to all,
Glenda

Tuesday update from Glenda

Hi everyone,
Thank you for your Birthday wishes yesterday. They made a tough day better.

Brian is reserving all his energy for healing so please do not call him or send him emails. If you want to be in touch, please communicate through me. I am at home with him almost all the time.

Love to all,
Glenda

Brian's Birthday

Hello everyone - this is from Glenda - today is Brian's birthday - a good day to celebrate life and look forward to next year and know that it will be better. Let's plan right now to have a party on March 23, 2010!! If you are so inclined, please feel free to send your birthday greetings to me via email and I will read them to Brian. Or of course you can post them here and I will read those as well.

We remain truly honored by your friendship, love and support.

Much love,
Glenda

Love and Respect

 I would like to dedicate this blog to my wife Glenda, one of the most loving, big hearted and generous people I know.  

These are trying times for us as I go through the painful healing process.  Glenda is every bit a part of my recovery and what I am going through.  I know that she feels frustrated that she can not do more.

I would like everyone to send her an e-mail, comment or positive thought showing your love and support for her.  I know it would mean a lot.

For Glenda

by James Metcalfe

With all my heart

There is no creature on this earth

So lovable and true

So charming and considerate

And wonderful as you

You are the glory of my day

The magic of my night

And in your eyes my eyes behold

A warm and friendly light

Oh, I could sail the seven seas

And wander far and near

And I would never find a soul

So helpful and sincere

You are the world and all to me

Wherever I may go

In valleys green with clover or

On mountain peaks of snow

I love you with my every thought

And everything I do

And every hour of my life

My heart belongs to you

I know longer use the “C” word when I talk about my condition.  I would like everyone to forget about the past and just focus on my future now.  If you would be so kind to send these positive prayers, thoughts and visualizations my way.

Brian is healed and disease free.  

Brian’s organs are healthy and functioning normally.

Brian’s cells are being renewed and restored.

I had a dream last night that I was an eagle flying over our property.  Good sign I would say! 

Thanks and lot’s of love to everyone.  I hope all is well and I can connect with everyone soon.

Brian

Hello Again

I’m back

I know I have lost a lot of you by not staying in better touch but I needed to take some time off.  Not just because of my lack of energy but I was having trouble mustering coherent thoughts.

It has been over 6 weeks since my last chemo treatment and I am coming around.  The last round beat me up pretty good so I have decided to take some time off to recover.  I still have my good and bad days but I feel much better.  I am trying to take it real easy but my "wanna do" list is long and it is very hard.

I am very weak and can’t do much but I am getting stronger and have put on a few pounds.  I can now do a girls pushup.  I have even gotten a little peach fuzz growing back. 

This has been one heck of a journey so far.  I have learned so much, grown and evolved.  I can't imagine what is still in store for me as this adventure journey continues down the road.  

I believe I have made the best decisions that I could along the way and everyone has shown great support.  I can't tell you how helpful all your love and support has been.  Thank you from all of my heart.

I will keep you informed on how I am as we go along but I doubt I will go into any specifics on my condition.  I view myself as healed.  That is what I tell myself several times a day.  Praise God, I am healed!  I am now going through a repair and rebuilding period.  

I still need and want your love and support.  I am not out of the woods yet and have a long battle still in front of me.

I believe there is no more disease progression at this point and it is all about repair  and renewal.  That is what my faith is locked in on and that is what I would like you locked in on as well.

For any one still out there, I can use more of your good positive healing visualizations and prayers.  

That my tumor continues to be devoured and eliminated.  

That all the little sick cells of my body are being replaced by healthy happy ones.  

That my organs are disease free and functioning normally.  

I go back for further testing on April 20th and I am visualizing a 50% reduction in the tumor by that time.

As I recover, and have less exciting hospital drama to share, I will probably transition this blog to something even more exciting, like the reclamation of our property, hence the name “Hills of Dreams”.  Oh Boy!  

So, till next time.  Lot's of love,

Brian

Update number two from Glenda

Hi Everyone,

We are having a good week – Brian is better and in good spirits. Many of the side effects of the chemo are quickly abating. He has started driving again and has resumed more normal activities around the house. His appetite is good and he is no longer restricted to bland, gooey foods. Good – I was getting tired of oatmeal!

Brian has asked me to say the following to you: “I have decided that I no longer want to use the blog to talk about my condition. I have learned that by talking about it, I am perpetuating the condition by forming a consensus of fact among my family and friends that I have this condition. Instead we should all think of me and visualize me as healthy and strong.

The words we speak and the thoughts we think all create our reality. We should think and speak about how we want things to be and not about what we see or are told. From now on I would like everyone to visualize me as healthy, disease-free and happy! It is fine to ask me how I am feeling, but please don’t ask for specific details."

Our faith is strong that Brian will be completely healed and all of our energy is devoted in that direction.

We will still post blogs once a week or so but won’t include details as we have in the past.

We are grateful for the love and prayers of our friends. Thank you so much.

Love to all,
Glenda

Update number one from Glenda

Hi everyone,

Brian and I are in Houston - I know it has been awhile since you have heard from us so we wanted to let you know that we are just fine. Last week we went to Florida for some special healing for Brian and he is much better - we had a great experience there and I can tell that he has more energy, more color in his face, more clarity in his eyes and more spirit overall. I even think he is taller! We flew back to Austin Sunday night and drove directly from the Austin airport to Houston for testing at MD Anderson on Monday and doctors' appointments Wednesday and Thursday - then home Thursday night (hopefully in time for my 9 pm soccer game). We don't know for sure what the doctors will say, of course, but we anticipate that they will want to set up the next round of chemo for him. I will let you know after we hear the results of the testing and the recommendations from the doctors.



Brian wanted me to tell you that he received a recommendation in Florida that he not blog at all for the next three weeks as it is taking too much of his energy, and that he modify his blogging afterward as well to include fewer details. Some people believe that once you put anything negative out into the universe, it lives there forever. You probably have figured out by now that I am not much of a blogger myself but I promise to update whenever there is new news.



Love to all,

Glenda

Gollum?

I'm sorry I am late posting this.  Those two and three hour daily naps really interfere with my time management skills.  

I am better, but my recovery seems to be taking a little longer this time.  I think that shot they gave me for my bone marrow is causing a lot of the aches and pains and fatigue.  I had labs run today and they said that my WBC’s were actually running high.  They attributed that to the shot.  That might also explain why I have been coughing like crazy.  I have had to increase my daily oral chemo medicine.  That might explain my headaches, hot flashes, and poor appetite.  Nothing

 tastes good.  I am having trouble getting enough calories and I have not gained any weight yet.  I had this realization today, as I was getting ready to shower and looking at myself in the mirror, that I look a lot like Gollum from the “Lord of the Rings” movies.  How embarrassing is that?

I have been cautioned to keep everything I post on my blog positive since what ever I post will linger out in the universe for quite some time.  I guess I should go back through my blogs and edit them.  I have tried to be realistic and factual but I am sure some of my stuff is on the negative side.  Of course, like the news, the bad stuff makes the most interesting stories.  Please let me know if there is something that I have posted that might negatively impact me in the future.  (like the Gollum thing)  I know that when I am in the brain fog place or hurting, I am not as positive, and it influences what and how I write.  I want to be real but I don't want to create future problems for myself either.  So let me know, and I will consider it.

OK, so I wrote something I want to share.  It started off as song lyrics then kind of morphed more into a poem or something.  I am not sure what to call it.  I know it needs some work, let me know what you think.

Void stills don’t look back

Solo passage thru the night

What appears bad is good

But can’t be understood

Boat adrift in choppy seas

Bow pointing randomly

Final destination unrevealed

It is such a mystery

I repeat the words in my head

But my pain is real

Soft places visualized

I know what I feel

This long journey is adverse

Precarious paths to traverse

I will fight the fight

Until I see the light

I know that he has a plan

I am his special lamb

He cradles me this foreign night

Until I have found my sight

I know I am in his hands

There is no place I’d rather be

My prayers are answered 

I have been received

I am heading to Florida tomorrow for some divine counseling and healing work.

The following week, I will be at MDA in Houston for lab and CT’s and to meet with the oncologist and surgeon.  It will be interesting to see what they all have to say.  Let’s pray for the best.

Lot's of Love to everybody.  Thanks so much for your love and support.

Brian

Update

I visited the Oncologist on Monday.  He was happy and seemed to think the chemotherapy has been working compared to how I first presented to him.  He was not happy about my weight loss and thinks I have lost too much weight. He was happy with all my lab work, although my oral chemo agent was not at the desired levels and it looks like I am going to have to increase that dosage.  He wanted me to get re-evaluated at MDA next week so we could start the next cycle of chemo the following week.  Whoa doggie - I was feeling like crap and the thought of another round made me panic.  I became weepy and thought I couldn't possibly go through this again.  It is hard to fully explain my emotions at the time.  I guess I felt defeated, like the wind had been knocked out of me.  It was probably all timing.   I told him I could not entertain any thoughts of more chemo at this time.  He said that he understood and that my chemo regime is going to leave me feeling like crap for a while but by next week, I will be feeling good and ready to start again.  Oh yeah right, what is he thinking.  I guess it was not realistic of me to think that I would be done with chemo after just two rounds but I was hopeful.  I will wait and see what MDA has to say.

I have contacted MDA but have not heard back yet.  I am a little nervous about the next CT scan.  On one hand, I know there has been improvement which I am anxious to see.  On the other hand, from the Pavlov’s dog, negative reinforcement perspective, I have not had good experiences with MRI and CT findings.

I have been slowly getting better.  Each day I see an improvement in energy and less of the just feeling like crap. I am still achy all over and very tired and weak.  Often, I will have either chills or hot flashes, especially at night.  I have started sneezing a lot but the hiccups are gone.  I also have no more leg swelling with standing and sitting.  I am walking more with less discomfort because of that, but I am still weak and unstable.  It is common for me to run into things.  I have been able to sleep longer.  Instead of getting up every hour or two, I am able to sleep three to four hours at a time.  Eating is still an issue.  I must be getting better since I have started working on last years paperwork for taxes.  I guess that is as good a measure of how well I am doing as anything.

I had an ugly, brutal dream the other night.  I have never had anything like it before.  I am not sure what it means.  I have had various scary dreams before but nothing like this.  I was trying to think back if there was a news event or movie that might have triggered it but can't think of anything.  Please do not read this if you are sensitive to violence and blood/gore.  As dreams usually go, it was very graphic so I won’t describe it in detail.  I am almost embarrassed to post this but I was hoping someone good at dream interpretation could explain it.   

I was watching a typical rugby game where the two teams were competing and one team was getting close to the goal line.  For some reason two players started having words and shoving each other.  Both were stocky, well built.  The defender had blond hair and was clean shaven in a light colored uniform and the other guy, on the offensive side and in a gray uniform, had brown hair with long side burns and one of those big thick mustaches. Their disagreement escalated to shoving and punching and wrestling.  As they were  trying to get one another into headlocks, the guy with the mustache head butted the blond guy.  The blond guy was dazed and hurt and kind of unsteady on his feet.  He turned around and bent over holding his nose, when the brown haired guy took both of his fists overhead and came down with all his strength, hitting the blond guy square in the back.  This knocked the blond guy down to his knees.  The guy with the mustache jumped on his back and put his head next to the other guys and proceeded to tear off the guys ear with his teeth.  He lifted his head, with the bloody ear hanging out and spit it out.  Then he grabbed the guys head and bit into his scalp and pulled a big swatch of bloody scalp and hair off of the blond guys head.  At this point I woke up. Oh my God, where the hell did this kind of brutal dream come from?  Is it my toxic medication?  Is there a message in there?  I really was not going to share this but it was so disturbing and I am at a loss to explain that something like that came out of me.  I am sorry if this is over share but I am using this blog kind of like a journal.  Well, I didn't share with you the erotic dream I had a few weeks ago, but that wasn't disturbing like this.  Any thoughts?

Hopefully, I will only have fun, light, upbeat postings in the future.  Thanks again for all the love and support.

Brian

Ugghh!

(Cartoon courtesy of Buck Cash)

I have been too much of a zombie to get anything posted this weekend.  I have been sitting around, staring off, moaning and groaning and communicating to Glenda in low mono syllabic grunts

I got my last two days of chemo on Thursday and Friday.  Pretty much uneventful except for the after effects.

This has been a miserable weekend.  I am totally wiped out.  Feel like a zombie.  It is like having a really bad flu bug with out the congestion.  I am very weak.  Unstable on my feet.  Sore and achy all over.   I have a bad case of hand tremors.

My mouth is getting sores.  My teeth ache.  I have had several bad headaches that Tylenol has not touched.  I am cold all day even wearing a hat, long sleeve shirt, sweatshirt and house coat.

I have been able to keep the nausea to a minimum but I almost threw up this morning a couple of times.  As close as I have come so far.

If I yawn too wide, my lips will crack even though I put chap stick on every 5 minutes

I have to be very careful not to bump into anything even slightly as I will bruise or swell

I weighed in at 147 lbs this morning, the lowest to date.  I went outside and I guess it was bit too windy cause I blew across the drive and tumbled into the rock wall.  I was able to crawl back to the house and get back inside before the wind got a hold of me again. (just kidding)   

I have no appetite and nothing tastes good.  I try and nibble on this and that, trying to find something I can eat to get some food and calories in me but it is hard to find any thing appealing.  The less I eat, the more nausea I get since my stomach is empty.  I am very sensitive to smell and most food smells make me queasy.  Even the thought of certain foods or if Glenda suggests a food, is enough to set me off.  There is very little I can drink.  Water is tough to get down, juice is too sweet and irritates my mouth, shakes are too rich and smoothies irritate my mouth and I can’t use raw fruit any how.  Even bananas are irritating now.  I spend a lot of time prowling in the kitchen.  It might take a dozen trips over an hours time to decide what I can stomach.

I am back visualizing the young resilient tree in the wind.  I am laying low, trying to weather the worst of the storm.

Till next time.  I appreciate your positive, nurturing thoughts.

Love,

Brian

Chemo Round II Day 6

I guess I should be excited that I only have three more days of chemo left but it is the week after that I want to get through.  Then I will be really happy.  Here is where I am at currently.  I am weighing in at 151 lbs. which is about 15 lbs under my normal weight.  My latest lab shows that my potassium is back up and my white bloods cells are still up.  Yippee!  What is not normal, but to be expected, is high blood glucose, low albumin (a blood protein) and low red blood cells.  My blood pressure still high, temperature good, no real nausea, still losing hair, more bone and joint aches but no real swelling or edema in the legs or feet.   I have a decrease in taste and appetite and the start of mouth tenderness.  My fatigue and weakness is getting worse which may explain why I am sleeping better.

Sitting in the treatment center today, I vowed I would never again forget my headphones.  I am more of an introverted private person and don’t really like strangers hearing what is going on with me when I am talking with the nurses or getting hooked up to IV’s.  Likewise, I am not real keen on hearing the details of their lives.  I know many of you would converse with all the interesting people and listen to their stories and feel right at home.  For me, it is like pulling teeth.  There are six sections of 4 treatment chairs with other chairs on each side for significant others. So I am trying to read and I can hear everything everyone is saying all around me.  Wow, the stuff people talk about.  I am not trying to eavesdrop but I can’t block it out without my headphones on.

Then you have the guy in the corner who is snoring away.  The person next to him is getting his dose of antibiotics and prednisone before chemo while drinking his mountain dew and watching CNN.  There is a lady in a wheelchair next to him, who happened to be out front having a cigarette when I came in.  The smell of rubbing alcohol is pervasive.  There are people coughing and hacking here and there.  It makes me reflexively pull the top of my shirt up over my mouth.  I look around and I seem to be the only one bothered by it.  I hate sitting there at lunch time because the spouses start whipping out their Big Mac’s, bologna or meatloaf sandwiches and you are holding your nose, trying not to gag.  I will be so glad to be done with this!  I don’t know what is worse for me, the people coughing and hacking or the poor people having trouble with their IV’s.  The guy right behind me had four different nurses spend over 45 minutes and about 6 attempts to get a vein.  They never did get him hooked up and sent him home to come back another day.  I was climbing out of my chair every time they repeatedly slapped his wrist or arm to try and get a vein to pop out.  I can’t believe I forgot my headphones!  It is such a good buffer.  The funny thing is that I have only seen one other person wearing headphones the whole time I have had therapy.  So I guess it is something with me.  

The only thing that is interesting about being in such an environment is the observation of the people.  One of the things I noticed form the very beginning at MDA and now at the oncology center, are the different stages and states that everyone is in.  They all have different energy levels, expressions, attitudes, demeanor, and body language  There are those who are alert, resigned, optimistic, angry, sad, withdrawn, outgoing, exhausted, scared, weepy, medicated,  lethargic and happy to name a just a few observations.  You can see just about anything and I sometimes wish I would take notes.  It is fascinating for me to observe.   

OK - so here is some of my monkey brain, chemo fog thought process that I will probably edit out later but is on my mind right now.  Please bear with me as I just sat down to give you an update and this ramble came out.

I have been thinking about all the people I have seen at the MDA and oncology center here.  How my perceptions starting off have changed from looking at them to being one of them.  How I would form observational opinions and  judgments about them when I did not even know a thing about them.

One of the things I got from reading “The Shack” (Thanks Jerry) is that it is easy to be judgmental.  How you can establish or perceive superiority over others when you judge them.  There is not a good reason, right or basis to do it and is subjective at best and self serving.  I know I have done it in the past, to what degree I am still evaluating but hopefully I will catch myself before I do it again.  To those of you who have felt judged by me, I apologize.  I did not really understand where I was coming from before.    I am sure there is a lot written on this and I have not yet really read anything on it, but it makes me think.  The book also suggests that we can also subjectively judge what is good and bad.  I am not talking about moral compass type stuff, but, how we may judge that a bad event is actually bad.  Hmmmm, is there another side to what is happening to me?  Does my perception, which is clouded by my judgment, accurately relate to this event in my life.  Our socioeconomic and cultural upbringing along with our life experiences influence how we perceive or judge.  Those who are strong in faith, that believe there is always purpose and nothing is random and accept life events as part of a master plan, don't need to judge for themselves.  I think most of us reflexively do judge.  So, is this event in my life, that I had judged as a terrible and bad thing, actually not a bad thing, and thus my attitude toward it be totally biased?  Can this subjective interpretation effect my outcome?  Just thinking out loud.

Three more treatments, a week or two of zombie land and then the recovery before re-evaluation.

Please hang in there with me.  "Death to Clyde" 

Thanks and Love to all,

Brian

Starting Again

I just got home and I am extremely tired but before I take a nap, I want to fill you in on the last few days.

I arrived at the Oncology center about 8:15 Thursday morning.  I had my lab drawn and then sat in the "patented" chemo recliner. It is a hard, ugly, blue industrial chair that can actually recline if you use the right combination switch pulling and body leverage. They hooked me up to an IV then injected the bright red adrimycin over the the next 20 minutes.  By the time I got home, I had a mild headache but felt OK otherwise.  The headache got progressively worse through the day and night. Tylenol and acupuncture did not touch it. I also had a little nausea that night.

I felt better Friday just in time for my next round at Seton.  Got settled in the room by 12:30 and got my vitals and lab drawn.  They came back in a couple of hours and asked me a lot of questions about leg cramping, heart problems and fatigue.  It seems my potassium level was at a critically low level and they said I had to be admitted overnight since my heart could stop at any time.  It seemed a little melodramatic since I really did not have any overt symptoms, but how can you argue.  Some of the nurses said they have never seen it so low with out any symptoms.  I am beginning to think that I am a bit of an anomaly with high tolerances and pain thresholds.  Or maybe, I am just really out of touch with my body.

So the new plan is, I have to do two, 2 hour bags of potassium drip, wait an hour, draw blood, wait for the results and then determine if chemo can start.  Hmmm, quick math suggests a finishing time at 3 in the morning.  Well so much for a good nights sleep.

They started me on the potassium drip and I got settled when the room phone started ringing.  Wonder who that could be, so I answered.  “your factory warranty is about to expire.  Please call....."  You got to be kidding!  What are the chances of that happening in a hospital room?  I hunkered down and started reading again when the phone started ringing again.  Thinking it might be Glenda, I answered “Hello”

“Who’s this”? Some hispanic male who obviously had a wrong number.  So you know how it goes.

“Well, who’s this”?

“No man, who is this”?  He didn’t sound happy.

“No, who is this”  Of course this could go on forever till the insults start flying.

“No, really, who are you”?  He was getting more upset and I think he thought he had the right number and I was at his woman’s house or something.  As much as I wanted to play this out, I thought, maybe he knows my room number so I quickly hung up.  So much more my little excitement of the day.  I decided to unplug the phone after that.

Five and a half  hours  or so passed and I learned that my potassium was still not at the level they wanted it.  They said it was really really low.  So new plan, go ahead and do the pre hydration, chemo and post hydration.  Then follow with another 4 hours of potassium, and retest before release.  Quick math, ughh, that means I should be wrapping up about 10:30 in the morning.  Oh what a fun night this is going to be.  Bummer!   

I had to deal with at least 6 different head nurses during the night.  Some for only a couple hours at a time.  Each had there own way of doing things. but all wanted vitals and had to check in on everything.  One of them set a bag to drip and didn't check back for two hours and found that it was never working.  A waste of two hours, but since I wasn't going anywhere any how, I did not let it get to me.  

Well I made it through the night with some sleep here and there.  I got the final potassium level back at 10:30 this morning.   My levels are still not up to where they would like it, but they released me any how.  I must have been really low if 8 hours of potassium drip did not restore my levels.  If there is anyone out there still sending me fluid elimination thoughts, I think you can stop now.  All the peeing I have done over the last month is the only reason I can think of, other than medication side effects, that my potassium has dropped so low. 

I am a little nauseated right now but not bad  Mostly very sleepy, so I am signing off and will touch base in a few days.

Lot's of Love,

Brian

Chemo Schedule & Top Ten List

Upcoming Chemo Schedule

Here is my next chemotherapy schedule for the demise of Clyde.   I would appreciate intense visual imagery and prayers of Clyde melting, dissolving, being eaten away, or how ever you imagine it.  It definitely helped last time.  I would really like to get this out of my system with this round of chemo and not have to do it again.  I am sure this is going to finish it, so come on everyone, let’s get Clyde the hell out of Dodge.  Supportive protective thoughts of my good cells and organs would be appreciated as well.  

Thursday  1/22 9  am

Friday 1/23 5  pm

Monday 1/26 9  am

Tuesday 1/27 9:30 am

Wednesday 1/28 9:30 am

Thursday 1/29 10:30am

Friday 1/30 5  pm

Then I get a shot for my bone marrow and immune system on 

Saturday 1/31 12:30 am

The chemotherapeutic agents will be in my system for for several weeks doing their thing, so I will be posting my condition and hopefully you will respond as well as the last time. I can’t tell you how much I could feel your help thru the last round. 

So here is my attempt at Letterman's Top Ten List.

 

The Top Ten Non-Medical Benefits of Chemo

# 10 No more house chores. 

# 9 Better than a skin wax any day!

# 8 Ughh -Don’t make but can’t sense of say what sometimes?

# 7 People only say nice things about you.

# 6 Can say stupid things without consequences.

# 5 A guy can just bust out crying for no reason and it’s OK.

# 4 Get waited on and served no matter how demanding and not have to pay.

# 3 Can lay around on the couch all day, eating and watching TV.

# 2 No more pesky ear hairs!

And the # 1 Non-Medical Benefit of chemo - drum roll please......

# 1 Another valid excuse for shrinkage 

I know - I will keep my day job.

Love to everyone.  Thanks for all your love and support.  My head is in a good place.  See you on the other side.

Brian