Wish we could just skip this week

Tuesday May 8-Friday May 11, 2011
Lithia Springs Park Site 40, Lithia, Florida

 

Yesterday On Monday,

after meeting Magi,  we spend 5 hours at the Moffitt Cancer Center for one appointment with one doctor.  This is the beginning of multiple days of difficulty. 

I’ve gotten behind on the blog not wanting to post these days.  Separately I  keep a hand written journal and haven’t posted any of this because it’s pretty bleak.  But it’s hard to be cheery all the time in a blog when your life isn’t all that cheery.   And this is my life.  So be warned before you go further.  But know too how much your comments help to give me something to look forward to.  The cheery posts are the previous 3 in case you missed them.  

 

Tuesday morning I do yoga out by the river.

 

 
Great setting, too much of a slope.
I’ll have to find a different place for Thursday.  Here’s today’s spot.
No decent pictures but you know what yoga looks like anyway.

 

 

 

 

 

David’s back is still bothering him.  This has been his worst “vacation week” since he started treatment.  He has had no let up from the fatigue or the back pain.  Vacation is over so he starts back on all the drugs today not having had the “rest” he has usually gotten.  He has not been able, for at least a few days, to pretend that his life is normal and so is he.

 

 

We spend Tuesday afternoon at another Doctor’s office.

 

 

I drive David to the Florida Cancer Specialists in Brandon for the shots and to talk his other Myeloma Doctor, Dr. David Wright.  In a serious situation like this it is mandatory, in my mind, that you have at least two opinions about what’s happening and what to do. 

 

 

 

He checks in, we wait, they call him and he again gives them the vials of blood that will show what his various numbers are according to their lab.  Then we wait for the discussion with Wright about what now.  Then we wait for the drug to be administered.  Thank goodness for blog comments I can read on my cell phone to give me something to smile about and take my mind off of the endless waiting.

 

Apparently Dr. Shain called Doctor Wright and they are in agreement that there must be another series of treatments.  I’m not so sure this is Wright’s independent opinion.  I don’t like this business of them getting together before hand to decide.  I wanted two doctors so I could have two separate professional opinions, not a group opinion.  No reason to pay them both of that’s going to be the way of things.  Because he’s been having leg pains, they decide to cut the Velcade dosage by 25%.  I guess that’s something.  Hope that helps decrease its side effects.  Otherwise he’s still taking all the other drugs at their same levels.

 

 

The treatment starts.  David gets the first velcade shot of series #5.  This will increase his  fatigue.  He takes the steroid dexamethazone on “velcade days”  since it also attacks myeloma cells and is supposed to mitigate some of the side effects of velcade like the back pain and the  fatigue.  But the Dex gives him insomnia.  Result, still no uninterrupted sleep.

This takes the entire afternoon.

He sleeps only marginally better.

 

 

Wednesday morning early I’m out running. 

 

David works on gathering all the details and information to decide about and set up the Stem Cell Transplant that is Moffitt’s next treatment step once they get him as far into remission as they can. OR as I suspect as soon as he has under gone the 6 sets of treatment that their protocol in research is set at. 

 

Getting information from individuals at any medical facility is not an easy thing to do since getting in touch with any medical personnel without having an “appointment” is nearly impossible.   He leaves messages with the doctors’ nurses, with the social worker, with the assistant, with the transplant liaison.  He has questions.  He needs information.  No one is available and no one calls him back.  Some voice mailboxes are full.  He sends emails.   We later find some folks are on vacation.  Isn’t it usually polite to indicate that in your phone mail message and have an “out of office” email response??? 

 

 

He has finished reading the frightening Bone Marrow Transplant Guide and it’s clear that this is an agonizing step for him and a tremendous amount of work for me.  We need a lot more information from people who have been there and done that relatively recently and from those who can help us find some sort of housing for this 9 weeks as it seems it will not be possible to stay in Winnona.   Increasing $$$ signs fill my mind.

 

 

Yesterday’s Dex did lessen the back pain but it is now returning.  The dex created insomnia is not gone.  The worst of both worlds.

 

 

Feeling pretty crummy on Thursday.

 

David’s still not sleeping and is exhausted and napping during the day as best he can with the back pain.  He moves from one location to another.  On the floor,  in the lounger inside, outside in the antigravity chair.  He has an appointment at the Neurosurgery clinic next Tuesday to get a directed steroid shot into this area of his back.  That is 4 days away and the last hope for pain relief as none of the pain medications prescribed by any of his now 3 doctors has worked.  This is obviously exacerbated by his weight and muscle loss.  He is down now 20 pounds.  No matter how much he eats or of what, he continues to lose weight at a pound every day or two.  I wonder if he will be physically able to do a transplant.

 

I spend much of the day down by the river so that I make no noise and won’t wake him.  I’m reading and journaling.  I’m feeling crummy too.  I look at life and wonder what is it all about?  What is the point?  To have fun?  To make some “contribution” whatever that means?   To bring others to your beliefs?  To make great discoveries? To get to heaven? To make “enough” money?

 

Most people spend their lives going to work 8+ hours 5 days a week, and when they aren’t “working” they are  doing their house/yard work, taking care of their children, and “relaxing” with TV or shopping or golf or puttering to try to recharge for the repeat.   Some are able to take a week or two “vacation” each year to somewhere else and try harder to have a good time.

We got out of the rat race for what seems like an instant and now we have a terminal illness to fight.  I’m tired.  He’s tired.  It’s very unfair.

My mood is pretty black.  I try not to be another drain on David’s energy.   I check the blog’s comments.   Seeing them there is like a life line to normality.

 

Friday is another Dex Day.  David has more energy.

 

I get up early and go running perhaps it will keep the blues at bay.

David is able to drive himself to Brandon for his second Velcade shot and takes his 2nd Dex of the week.  It’s a Dex Day as we have come to call it, when he has more energy and is very chatty.

To those of you who have made it all the way through this rather bleak post, I apologize.  Probably should have left this unwritten or at least un posted.  But it’s my life now.  Many of our days used to be at least partially diamonds, but too many days now are stones. 

Today is a Dex Day and that’s at least somewhat better.  Tuesday is only 3 days away.  Seems terrible to wish your days away, to want them to pass more quickly.  Maybe I’ll go to up to Sweetbay’s Red Box and rent Joyful Noise and see if Queen Latifah and Dolly Parton can light up the place.

 

I’ll go later, David’s managed to fall asleep in his chair under the awning.  Don’t want to disturb him with the camera or the car so imagine him in the chair by the door.  I can go when he wakes up.