To all

     I wish this was better news, but it's not.
The one thing that I promised is that this would be sharing news good or bad.
Family members will be taking this over from now on. 
It is apparent that I am bedridden and I am not going to be able to keep this up.
Weather my time on this earth is very short or longer then that, sharing this time with each of you has been a special blessing and I appreciate that the most. 

I have been married for 24 years and together for 28 years (I sure hope my math is right on that one) to my beloved wife Deanna. 

The hardest things in this whole process is saying goodbye. 

To all
Thank You

its been a whlle

Some random notes...that's all I can do.

• 3 days ago Deanna thought she lost me. My life is kind of different.  
• I have received some  visits from a St Louis friend and family from Key West.  The visits are wonderful.  I appreciate the effort of the visits.
• People are bringing food which helps.  
• Deanna's work has   been great in their flexibility.
• I wonder if there is any good blue stuffing?
• If you don't hear from me often here often on this something is wrong.

I will update More often as I can. Thanks to all.

I am on ok

I am finally doing better since I am posting.  Look for more tomorrow or  the next day.  Thank you for all  the patience.

Hospice

I am now in home hospice care listening to my dog bark...protecting me of all the other dogs moving down the sidewalk.  I am laying in a hospital bed they brought over. Out of necessity.,. No.  Comfort yes.  And heck it was free.

I was able to talk with my sister the other day.  That was nice. She should be someone to look up to with anyone with cancer.  She and I both are missing something on our DNA which is a cancer syndrome.  I am sure if I knew the number of chemo cycles she has had it would make my jaw drop.  Hers began pre 2003?

Deanna's taking a vacation right after valentines day.  I am very happy for her, she needs a break.  We both need to take a deep breath.

To describe hospice its all about pain management and comfort.  To that end FedEx came yesterday to deliver a package.  Cookies?  Cake?  Nope some wickid meds they call a comfort pack.  A doc has to approve the opening upon a nurse request.  Now its in the fridge by some veggies.

My mind is good.  Happy Saturday.

How do I top the last post?

My mind is numb.  I know what was told to me and I understand the ramifications of what was told to me.  We are at a point where they are looking for more things, we cant just say, hey lets give him this heavy drug with these hard side effects where possibly he can  have a  month or 2 of what kind of quality of life.  There is one thing I am hoping to get an answer tomorrow which will allow the possibility of something working for a while.  That one I will embrace.  But my main goal moving forward is to wake up and have a good day.  And the next day have another good day.  And make sure I do this without pain and as comfortable as possible.  If the 2nd chemo worked, I am sure I would be back at work doing my thing, but that is just not the case.  I will miss the HR Block clients, my co-workers, and all of the wonderful people I have met at Xerox.

So the news wont change much.....figure on a daily basis I will get a little more knocked down.  My ability to do much of anything is limited.  Today and recently its vastly improved, but its not to where it was 3 months ago. 

The blog will continue.  I will hold nothing back.  I am a dying man.  But on the other hand, I am a man who is very much alive who still has a really good attitude.  There will be posts of reflections, some fun posts, some wishes, etc.  I am going to have some fun with it.  An example, I had a mole.  I plucked a hair out of it, (now that's appealing).  During a HR Block Class I could either listen to someone talk about deductions or study my hair.  That darn hair was the strongest thing on my body.  Now why was that.  Thick, good root structure.....this could be used as the newest weld or something.  As the mind kept going, I was asked a question.  Oops....but I still wonder about that.  If I had hair that strong on top of my head, I would be long gone, but my hair will still be there....

Ok- time to turn off that topic.  I appreciate all who are sticking with me and hope to see most of you soon.   My abilities sometimes don't equal my hopes.

I am at the end of my book

Saw the doc yesterday and that was basically told to me.  The treatments that are open to me I have either failed or I am not eligible.  I haven't given up nor do I think this doc is wrong.  She is in the camp of quality of life.  Good camp.

I had a blood transfusion yesterday.... Those aren't nice but it should make me feel better.  More later...I am doing on tablet and Deanna just woke up.

Sitting in front of the compter- baby steps

Ok- this one was much harder than it should have been.  I have been home, not doing much.  For the most part my day consisted of going from the couch to going to bed to going to the couch, etc.  I was just trying to find a place to get comfortable.  This occurred after the radiation.

I was on a schedule of meds after New Years Day to help with the pain in the hip. During "post radiation" days corresponding to  Deanna's day offs, I had a couple of instances where the pain was just so intense, or I just had a hard time getting out of a chair.  Deanna contacted the doc, and now I am on an extended release Morphine.  This seems to be doing what it needs to be doing, sleeping better and rarely I have pain that the meds aren't helping with.  That got old really quick.   That's the importance of help.  If anyone thinks they can do this alone, they cant.  Because of Deanna we got the stronger meds, and my days are better.

The doc is tomorrow, and this could go in 100 different directions.  I am grateful that she is so free with her appointments.  This appointment is 1 week earlier than originally scheduled.  This one we will discuss further treatment plans, I am sure review my pain management stuff, and other things. 

So what are baby steps.  Standing up and sitting in front of the computer for a little while.  Kind of different than my recliner.  I am going to try to get out today, the more I do the more I will be able to do.  But I cant think for a minute that I can start over going 100 miles an hour.  The radiation side effects this time really got me.  But hopefully this week will be a nice steady recovery. 

Hopefully I can get back to living my life again quickly.  Thanks to all who have been keeping up with this.

Something is up

I am on my couch with my tablet.  So this won't be long but overdue.  Radiation has been complete for a while and everything should be pointed up. Recent pain not taken care of with the normal pills had us make a decision. Time for Morphine.  Something to get used to.

Lots more to upstate, but I know sometimes no news is not a good thing.  I am just glad the pain went away.

Still doing the radiation recovery thing

I am presently on my couch banging away at the tablet.

I am back on Xerox disability which is disappointing.  Due to my hips...the messed up walking, and the radiation recovery it was impossible to give them what they needed.  Hopefully things stabilize and I can get back at it.  I anticipate this happening.

Presently I am on the max pain killers....hopefully I can start reducing some next week.  This all was from the hip pain and the treatment that followed.

At 230 yesterday life seemed good but I made a comment to my brother maybe I should go upstairs and lie down.  I tried to increase my activity level the last couple days and walk VERY short distances, we are talking 100 steps.  Well, that may have caught up with me.  I need to let my body heal from the radiation.  Not doing much of anything today.

I don't advocate taking more medication than you should, I added a small dose of painkiller to the normal yesterday.  This I did at 8pm and boy,  it took everything away, I slept wonderful feeling decent today.  I felt naughty but wow did that work.  OK.  I just documented my secret, hopefully not needed again.

Enjoy the week ahead.  Hopefully a week from now I can post some good stuff.

Very quick update

Radiation was finished Friday.  10 sessions in 1 day.  What a treat.  The first couple of days, oh my!!!!  That's what they have pain pills for and that's why I have help here.  Things that used to be pain arent anymore.  I am walking better, if you consider 5 days ago I wasnt really walking at all.  I am sitting in a chair now, not updating this from the tablet.  I know every day that goes by gets better.  And the same is happening for me.  Told you- quick post.

Hello Americans, you know what the news is, now the rest of the story

In the Ebert house we start each day with Citrical.  C for citrus cal for calcium.  Citrical.   Page 2.

As we visited the doc yesterday, included in that joy were 6 Xrays and blood work, we ventured to the unknown.  We had no idea how the day would go.  I was scheduled for chemo.  My walking due to my hip proved "exciting".  Did I need a wheel chair to get around?  How best to control the pain.  Can I get a drug to calm be down when things get a little much.  And what do I do with work with this stuff going on.  And now the rest of the story.

The recommendation was to get radiation in the hip.  And while I was at it they were going to zap the left shoulder.  On one hand I am thinking good, the pain is gone.  My walking will be back to normal.  On the other hand the time spent with all of this was about a month.  Get an appointment with the doc, participate in the planning, 1 round of xrays and 10 sessions of getting zapped.  A ton of effort but worth it.  

Well I know people are praying for me.  So try this on for size.....I got a same day appt with the doc.  They did the planning that Day. I get treated Friday just one big zap instead of 10 smaller ones and I should begin to walk normal shortly after, pain free.

I was able to pick up a prescription for Xanax.  That will help.....I have had anxiety.  And to refer to my previous post, Deanna was with me all day Monday.  Tiffany let her take the day.  Brother Jim has Friday.  The support has been awesome.

And now you know the rest of the story.

Time to talk about brother Jim

When you are trying to a cancer patient you will be asked to do some really strange thing. Such as helping your brother remove his pants.   Also being his constant golpfer without complaining.  The key for someone in my condition if you are going to help,  don't complain in front of the person.....maybe step outside and go to the car and scream.  But there is nothing more stressful then asking for something and getting push back. Brother Jim has done the following for us since October:

• Stepped in to become our dog walker.  October it allowed Deanna to stay with me in the hospital.  Later on it gave her a brake during some long days at Tiffany.
• Getting me everything.... Yes everything.  Could you bring my blanket and a pillow from upstairs, a glass of water, lunch, clothes, etc.  I ask and he has no problem.
• Taking me to many appointments.
• 2 days ago helping me walk to go to the bathroom.
• When I was out of pain meds driving to Loyola and picking up a prescription to get it filled.  This is due to Illinois law, the doc can't call it in.
• He even started to do dishes.  
• Going shopping for us so we have food in the house.  Deanna has gone through retail hell at work and recently my walking is funny.

The support given to me is tremendous.  Here is an analogy.  Deanna is my security blanket.  I couldn't do it without her.  Brother Jim is the blanket to make sure my toes don't get cold.

The beautiful thing is I can ask plenty of people for help.  It stinks to need it and I am very greatful the help is there.

Hips don't lie...they hurt.

This is from my tablet...now sitting up in a chair is funny.  The beginning of this had me with cancer in both hips.  It wasn't giving me a problem, didn't feel anything but an occasional tweak on the left.  I guess there was a lot of disease in there so the decision was to radiate.  The right was fine at the time.  Well times up on the right one has pain to the point its hard to walk or sit upright in a chair for long.

On New Years Eve I did some walking....but not far.  All told about a mile over 6 hours.  We had fun.  The Mb financial park in Rosemont was a blast.  I walked slow but had no pain.  Thank you Advil.  But when we came back to the hotel I had a tough time getting the pain to stop.  2 days later I am out of pain sitting still....but walking has its tough parts and hopefully some bed rest improves things.

That's the update.  I have been struggling....hopefully tomorrow is better than today.