They say it’s….

…better to give than receive.  But it’s a lot harder to receive than give.

Two weeks of not really having the energy to write a blog, much less load the dishwasher, plant a flower, cook dinner, get dressed, or walk across the room!

NOTE: ‘Virtual hugs’ are not necessary.  My cup runneth over with your love, support and prayers.    This is more ‘for the record’ so my grandchildren can read it all someday if they want.

So, two weeks ago the fourth cycle started.  Two chemicals on Tues and  my energy level tanked again.  Back to not being able to walk across the room without having to sit down and catch my breath.   So frustrating to have to just sit and watch and not ‘do’.

But, Heather moved back to CA two weeks ago so Mardelle has extra help with this tired old man.  She’ll be living here with us till she finds a job and gets a place to live.  Good to have her home.

Last week was a one chemical day and my white blood cell count went south again.  But after the second ‘booster’ shot it was above the good range and I felt good for almost a day.  Then my blood pressure, which had been dropping, hit 90/something and I really felt it.  So my chemo Dr. said to cut back on the BP medicine I’m taking – for my heart, the other challenge in my life.  But being a tad paranoid, I called my cardiologist to get his OK – which I got.  So maybe we can get some energy pumping again.

One more ‘cycle’, then a CT scan to evaluate,  and life gets interesting again…. what paths will present themselves?

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.             Robert Frost

GOOD NEWS…..BAD NEWS

GOOD; The ‘activity’ of the cancer in my liver is down 50%

BAD: It’s still growing but not as fast; only 2mm bigger.

BAD:  The lymph node near my sternum IS cancer, not a ‘reactive’ cell

GOOD: The chemo is also working on that spot; it is smaller

BAD: ,it’s not removable by surgery.

BAD: There’s a new ‘spot’ on a rib.  Also inoperable.

GOOD: We are continuing with chemo; adding one more ‘session’ to the current schedule.  Will do a CT scan after them to see what the liver looks like then.

GOOD:  If I need a shot for red blood cells, Dr. has reassured us that it is a good thing, despite the ‘legal’ disclaimers.

BAD/GOOD: If this isn’t working good enough, there are alternates – radiation; injection into the liver.

BEST: Asked specifically if the ‘good’ results at this point could mean extended ‘life’, she said yes.  Didn’t ask the obvious, and understandably unanswerable follow up question….

That’s life, that’s what people say. 
You’re riding high in April, 
Shot down in May. 
But I know I’m gonna change their tune, 
When I’m right back on top in June. 

That’s life, funny as it seems. 
Some people get their kicks, 
Steppin’ on dreams
But I just can’t let it get me down, 
Cause this big old world keeps spinnin’ around. 

I’ve been a puppet, a pauper, a pirate, 
A poet, a pawn and a king. 
I’ve been up and down and over and out 
But I know one thing: 
Each time I find myself flat on my face, 
I pick myself up and get back in the race. 

That’s life, I can’t deny it, 
I thought of quitting, 
But my heart just won’t buy it. 
Cause if I didn’t think it was worth a try, 
I’d have to roll myself up in a big ball and die.
“That’s Life”   Frank Sinatra   (Lyrcs by Jimmy Webb)   
NOTE: I would have linked this to the YouTube video, but the IT admin here in the hospital have blocked YouTube!  Didn’t want to wait till I got home this evening; so just Google “YouTube That’s Life Frank Sinatra” and you can watch/hear him sing it.  

Lost it….

…Big time.  It’s not all wine and roses.  It’s never wine while on chemicals.

Today I finally let it get the best of me.  Went in for a blood check to see how my red blood cells are.  Not good apparently.  Number is just below the “Oh $%&#” line.  So….. I was told I need to have a shot of some pharmaceutical wonder drug  “Aranesp”, and… a blood transfusion tomorrow.

Before I have the shot I have to sign off on the ‘legal’ disclaimers which include:
a. “Using Aranesp can lead to death or other serious side effects.”  Yes, death is certainly a serious side effect…     and I already have something doing this, thank you all the same.
b. “These risks include that your tumor may grow faster and you may die sooner if you choose to take Aranesp.”   So — I’m taking chemo to make my tumor stop growing so I can live longer, and now I should take a shot that may obliterate all that??
c. “You may get serious heart problems such as heart attack…. and may die sooner….”  Been there, done that.  Why am I not feeling good about this….
d. “…should not be used ….If you have cancer and you will not be receiving chemo for at least 2 more months.”   Right now I’m scheduled to be finished with chemo in two WEEKS.   You see where this is going….
e. ” Tell your healthcare provider about any side effects that bother you….”   Like a total adverse reaction to the form I’m supposed to sign?

I respectfully declined (OK, I flat refused…) to have the shot.  But that was just the beginning…..

After refusing to have the shot I was told my Dr. would call with info about the transfusion and shot after she came in at 2.   I waited till 3:30 and started calling to find out about the transfusion.
1. Call the oncology clinic, told I have to check in at the hospital Admissions desk tomorrow.  When? “Don’t know”  and get transferred to someone’s voicemail.  Fat chance they will get back to me in time, so…
2. Call the hospital Admissions desk where I’m supposed to go and they say: “We won’t know what time until tomorrow.”  Honest to God, they said that!  She came close to getting an earful…
3. Call the clinic back and demand that someone find out what time I have to be there.  9 AM!!  Good thing I called.
4. THEN… I get a call to tell me that I need to rush over to the hospital and have my blood taken so they can type it.  If I don’t get there then it will take 2-3 hours tomorrow morning to get it done before they can do the transfusion.

” Stupid ($%*#ing) incompetent, idiots.  I’M NOT BUYING A DAMN CAR HERE…. THIS IS MY LIFE WE’RE DEALING WITH”…and a few more choice words that Mardelle had to listen to – upstairs – with the door shut; and she still heard every word.

Must have been the chemicals…..

The only saving grace was that the tech at the lab got an A+ for needle insertion for the blood draw, so I came home in a better mood.

I think I lost it
Let me know if you come across it
Let me know if I let it fall
Along a back road somewhere
Money can’t replace it
No memory can erase it
And I know I’m never gonna find
Another one to compare            “I lost it” …..Lucinda Williams

Change in plans…..

New Dr. told us Tues that since I’ve finished 3 ‘sessions’ she and my previous oncologist (who retired) decided to have me get my PET/CT scan next week and will review the results on Tues the 12th when the next ’round’ is set to start.  So we’ll have some news about 2-3 weeks earlier than expected.

She also said that the ‘nodes’ that are ‘lit up’ in the area of my sternum are not the kind to have the cholangiocarcinoma cancer that is in my liver.  If so, that is very good news.  PET scan will tell.

For the ‘numerologists’ in the audience… I got the original news about this event in my life on 12/3.  We will get the news about the chemo results on 3/12.   Let’s hope the diagnosis is reversed as well.

One day at a time……

For there’s a change in the weather
There’s a change in the sea
So from now on there’ll be a change in me
My walk will be diff’rent my talk and my name
Nothin’ about me is goin’ to be the same,
I’m goin’ to change my way of livin’ if that ain’t enough,
Then I’ll change the way that I strut my stuff,
’cause nobody wants you when you’re old and gray
There’ll be some changes made.                                                                                                               “There’ll Be Some Changes Made”  ……Benny Goodman