Thursday, July 26, 2012

The best news, ever......

On  Tuesday, my honey had his long day at the Cancer Center.......Infusions of Zometa to strengthen his bones and IVIG to boost his immune system. All the monthly labs were done.

He has been on a "Chemo Vacation" since May 26 - exactly two months, and he's still in remission....CR, whatever......his numbers are, great.....his labs are great!!

He's feeling better, by the day. He's up and around.  (Yes, I'm knocking on wood, as I report jinxing this time!)

Thank you for all your prayers, and good thoughts...and Thank you Lord!!

A Handful of Spoons............

A few months ago, I was honored to be a judge in the WEGO Health Activist competition.. A Health Activist may be a caregiver, a patient, a medical professional, a family member, a friend, Relay for Life participants - anyone who promotes awareness, or cares about those with various illnesses, diseases,  health conditions, or disabilities.

There were so many illnesses and diseases of which I had been unaware, until my participation in this online event. The competition, and awards, recognized individuals taking extra steps to promote awareness and provide information through many different avenues, both in person and online in blogs or web pages.

Christine Miserandino, afflicted with Lupus,  and the originator of 'The Spoon Theory' was the winner in her category of Best Affirmation Post.  This young woman has been very creative in her use  of spoons to explain her illness and how it affected her and her abilities.  Healthy individuals are able to go about a daily routine  without a need for medications. People with illness or disabilities have to plan their day, and most often aren't able to accomplish the most minimal of tasks either because of pain or a disability.  Those of us, living a normal life - without illness, have an unlimited number of "spoons" to get us through our days. 

What a brilliant idea! Why hadn't I thought of something like this! 

I began to think of ways to use the Spoon Theory to define Bob's Multiple

Christine's Lupus is painful and debilitating and requires her to plan her days, much the same as Bob.  Each morning, he picks up an imaginary handful of spoons when he awakens.  Just to get out of bed he must give up a spoon. Standing up straight, and waiting so he won't be dizzy, uses another spoon. The spoons he has left must take him through the day and all the things he needs to do.

He slowly walks to the bathroom - using another spoon. Each activity - washing his face or brushing his teeth, uses a spoon.  If he feels well enough to take a shower, and get dressed, it uses more spoons.

A trip to the kitchen, eating breakfast, taking his meds - each must use one of the spoons he is holding.  Every activity that we take for granted, uses a spoon for someone who is ill, or disabled. Some days, there just aren't enough spoons to make it through the day......but on other, better days there may be spoons left over. Those are the good days!

Christine's 'Spoon Theory' actually helped me to realize, and understand, what my honey must be going through. If I were given a handful of spoons to allot to each activity of my day - I'm sure
there would probably be days when I'd be sitting, in my chair. Days much like those that fill the "new normal" of my honey's life.

I'm thankful that lately, he seems to have spoons left over. These days, he isn't using his handful of spoons. I'm thankful for Christine and her analogy of spoons and how they can relate to illness and pain, not just for my honey - but for anyone with an illness or disease.

Strangely enough, Christine's blog is entitled 'But You Don't Look Sick'. Often, my honey is told how good he looks.........but nobody knows how many spoons he's had to use that day!

You can read Christine's 'Spoon Theory' at

Monday, July 16, 2012

Living Life...........

If I've learned anything about this disease and the effects on the "victim", it's that one should not get too excited when good things happen because they can be short-lived.

Jumping right to the good news first - my honey is still in remission (Complete Response), so the vacation from treatment can continue.

Looking back over my journal, and calendar, and notes of the past 21 months since my honey was diagnosed, I've noticed even though he has responded well to treatment, there have been many not-so-good days.  Fearing the bad days might outnumber the good, I elected not to count.

He has been in remission for several months but seldom feels good. So frustrating - for both of us!  Remission was supposed to return our lives to normal, or so we thought.

"What good is it to cure a patient's cancer if the process leaves him or her incapable of living life?" Leslie J. Waltke, PT

My mission, as his Caregiver, was to try and find the reason since the good Dr. H., seemingly in bewilderment, could only shake his head. I took away every drug that I possibly could, without endangering his life, (didn't stop the pain meds, or the BP med, or the Diabetes med, etc.)  all to no avail. Time to look elsewhere.......

When we met with the NP at his Pain Mgmt Specialist's office, we discussed the need for more Dilaudid for breakthrough pain, as well as how badly he seemed to feel. We questioned if the pain meds could be the reason for his never feeling good. (The morning of our appointment, he felt so bad that he sat in the chair and slept while she visited with me). She questioned his low dosage of MS-Contin (15 mg. every 8 hours).  His Pain doc decided to increase the MS-Contin dosage to 30 mg every 12 hours and discontinue the Dilaudid. His pain is under control with the increased dosage, and discontinuing the Dilaudid seems to have made a difference in how he feels.  Amazing.....he had been on this med for well over one year. We could have stopped it (had anyone known) and he would have felt better! You're kidding me!!!

In the meantime, he had Cellulitis in one of his toes and this required an antibiotic, which caused dizziness!  The antibiotic was completed the end of last week, and the dizziness appears to be getting better.

He's actually doing pretty good. He's in remission. His kidneys are functioning. His pain (other than his legs) is under control.  He hasn't been to the hospital in 5 months! His appetite is pretty good. He looks good. We may have settled into that "New Normal" stage of our journey. Things are pretty stable....., if we can just get back to "living life" part of this "new normal", it will be good.  Living life entails getting up out of this chair to which he has grown so accustomed. I suggested maybe it was time for some Physical Therapy and was met with resistance. So, I've started my own type of "Positive Re-enforcement Therapy". I tell him how good he looks. I tell him he "looks" like he feels better. Some days it works - some it doesn't.

Therapy can come in many forms, and the latest"addition" to our family are really trying to do their part to bring a smile to both our faces. We rescued "Wee", age 2, and "Precious", age 5 months, both Toy Pomeranians. They get us up, out of our chairs, and help us to focus on something other than the roller coaster ride of MM.

How great it would be just to get on with living life, whether it be normal or new life!!