2008, a year of reflection

As I sit here on the last day of 2008, I'm truly thankful for yet another year come and gone. Fantastic, horrible, glorious, painful and back to wonderful again. . . the year has run the gamut of good and bad. Highs and lows, makes life interesting albeit challenging.

The most memorable day of 2008 was the day our little Grandbaby Audrey came into our world on June 19th. What a bundle of love and joy she is for me. It is like de je vu for me as well, she looks so much like Jen did as a baby.

We can also count our travels as a high point this past year. We went to Disney World in Feb for 10 days and France, Belgium and Netherlands in Sept-Oct for 3 weeks. We had a fantastic time on each trip, even though they were very different.

Work has been steady and productive for Terry, even though we took 6 weeks vacation. It was a good year until November when the brakes kicked in and work skidded to a halt. We are worried about work coming his way in 2009, as is everyone. 

Anyone need the services of an Architect? There, my shameless plug! LOL!

Let's see, Terry turned 53, me 52. We've been married 16 years, who knew the Pennysaver could produce that?!?!?

And then, there was all my medical schtuff, which I won't recount here, but suffice to say I filled MY quota. Terry was well up until Dec. when by my prodding, he finally went to have the 'mystery weird bump' on his nose checked. Yep, cancer. He goes in January to have it cut and dug out - YIKES! I told him he might not have a nose left, he he.

Aaron had his share of surgery too. Poor little guy had to withstand, not 1 but 2, hydrocele surgeries when both testicles became swollen and enlarged. Of course they happened months apart, Spring and Fall, so it required 2 separate surgeries. But he came through with flying colors, with not much pain or remembrance of either incident.

And then poor Bucky, he is such a good cat. He was at the vet 4 times this year. As a diabetic cat on 2 insulin shots a day, he sometimes has high blood sugar issues that land him in the hospital for a re-evaluation and insulin adjustment. He just HATES going to the hospital. Our bank account does too! ; )

Other than day to day life, that's been our year. I hope I can look back and remember 2008 in the happier lights, to say 'Yep, 2008 was a great year."

Here's to 2009, for a Happy and Healthy New Year!


ImageChef.com Poetry Blender

A new normal

What is considered normal anywoo??

I do know what my 'normal' feels like, at least in the world of CF.

Since summer, my normal has changed. I'm not sure if my sinus surgery and anesthesia had a hand in triggering the change or not. But I definitely have lost some lung function over the last 5 months. Lately I've been short of breath doing simple things like casually walking, eating or talking. Grrrrrrrr. I don't like it one bit. I don't like feeling like I've just taken a run up the block after eating a bowl of cheerios.

The numbers don't lie. I had a clinic appt today, and yep, my PFTs are down, down from just 12-8-08 release from the hospital. I really didn't need a PFT test to tell me that, I knew. So after having my PFT's stable at around 55%, give or take, the last 8 years, my new baseline PFT is at 50%. A huge difference to lose in just 5 months. A huge difference in the world of breathing.

My doctor went over my chest xrays and CT scans since April. I've had significant progression in my lower left lobe area. This is the same area I had carved up and pieces removed almost 9 years ago. My poor itty bitty left lung has finally given in and up. I virtually have very little lung function left there, trapping secretions in dead spaces. Again no surprise to me. I can feel that area fill up with goo, gurgling and whistling as I breathe. Yes, you can hear it from the outside of me.

I am actually blessed my surgery 9 years ago kept my left lung viable as long as it did. My thoraxic surgeon at the time, said he would be happy with a 5 year success. He said that if the partial removal didn't work, I may be facing a total left lung removal down the road. I'm at the end of that road now.

I discussed this option with my doc today. She said at the time, that may have been the case, but not now. My right lung has also progressed, although not nearly as bad as my left. If we were to remove my left lung, my right lung alone would only be under 40% lung function, which is nearing transplant talk time. So transplant is my only next option.

So I am now to become more 'aggressive' with my treatments to target my left side. Gotta keep the goo-pooling from growing bacteria and bugs that make me sick. Lying on my right side, on a 60 degree slant, head down, and either use my vest and or have Terry beat me, LOL! Good old PD & P - Postural drainage and percussion. This is in addition to the already 2-3 full on treatments I already religiously practice.

Meh, so CF is my whole life . . . it is my full time job.
I always knew this day would come.
This is my new normal.

Our Christmas 2008

Make a Smilebox slideshow

. . . just wanted to say

My prayer is for all my family, friends and families to have a very
Blessed and Merry Christmas!

May the New Year bring health and happiness.

The Cab Ride

My cousin sent this to me, and it virtually left me in tears.
A beautiful, touching story and perfect timing for me to read during the Holiday season.
I was just about to write a post about being a 'Bah Humbug' this year.
I think I like this better.

Thanks Cindy, for sharing a very enlightening story.

The Cab Ride

I walked to the door and knocked. 'Just a minute', answered a frail, 
elderly voice. I could hear something being dragged across the floor. 
 
After a long pause, the door opened. A small woman in her 90's stood 
before me. She was wearing a print dress and a pillbox hat with a veil 
pinned on it, like somebody out of a 1940s movie. 
 
By her side was a small nylon suitcase. The apartment looked as if no 
one had lived in it for years. All the Furniture was covered with sheets. 
 
'Would you carry my bag out to the car?' she said. I took the suitcase 
to the cab, then returned to assist the woman. 
 
She took my arm and we walked slowly toward the curb. 
 
She kept thanking me for my kindness. 'It's nothing', I told her. 

'I just try to treat my passengers the way I would want my mother treated'. 

'Oh, you're such a good boy', she said. When we got in the cab, she gave me an address, and then asked, 'Could you drive through downtown?' 
 
'It's not the shortest way,' I answered quickly. 
 
'Oh, I don't mind,' she said. 'I'm in no hurry. I'm on my way to a 
hospice'. 
 
I looked in the rear-view mirror. Her eyes were glistening. 'I don't 
have any family left,' she continued. The doctor says I don't have very 
long.' I quietly reached over and shut off the meter. 
 
'What route would you like me to take?' I asked. 
 
For the next two hours, we drove through the city. She showed me the 
building where she had once worked as an elevator operator. 
 
We drove through the neighborhood where she and her husband had lived when they were newlyweds. She had me pull up in front of a furniture warehouse that had once been a ballroom where she had gone dancing as a girl. 
 
Sometimes she'd ask me to slow in front of a particular building or 
corner and would sit staring into the darkness, saying nothing. 
 
As the first hint of sun was creasing the horizon, she suddenly said, 
'I'm tired. Let's go now.' 
 
We drove in silence to the address she had given me. It was a low 
building, like a small convalescent home, with driveway that passed 
under a portico. 
 
Two orderlies came out to the cab as soon as we pulled up. They were 
solicitous and intent, watching her every move. They must have been 
expecting her. 
 
I opened the trunk and took the small suitcase to the door. The woman 
was already seated in a wheelchair. 
 
'How much do I owe you?' she asked, reaching into her purse. 
 
'Nothing,' I said. 
 
'You have to make a living,' she answered. 
 
'There are other passengers,' I responded. 
 
Almost without thinking, I bent and gave her a hug. 

She held onto me tightly. 
 
'You gave an old woman a little moment of joy,' she said. 'Thank you.' 
 
I squeezed her hand, and then walked into the dim morning light. 

Behind me, a door shut. It was the sound of the closing of a life. 
 
I didn't pick up any more passengers that shift. I drove aimlessly lost 
in thought. For the rest of that day, I could hardly talk. What if that 
woman had gotten an angry driver, or one who was impatient to end his shift? 
 
What if I had refused to take the run, or had honked once, then driven 
away? 
 
On a quick review, I don't think that I have done anything more 
important in my life. We're conditioned to think that our lives revolve around great moments. But great moments often catch us unaware - beautifully wrapped in what others may consider a small one. 
 
PEOPLE MAY NOT REMEMBER EXACTLY WHAT YOU DID, OR WHAT YOU SAID, BUT THEY WILL ALWAYS REMEMBER HOW YOU MADE THEM FEEL. 

 
Be thankful for all that you have.
May God Bless you and your family this Holiday Season!

HOME!

'nuff said.

Vacation!!!

So soon after the recent, long trip to France, you ask? Yes, this was a last minute trip that I was hoping would happen. Just a short road trip to my final destination.

And just where did I go? Here's a hint:
The skyline of the beautiful (?) city I'm staying.


The 'resort' where I'm staying, is all glass, modern and very sterile white.


I checked into the lobby and got my room number. A kind volunteer helped me with my bags, as we entered the elevator to the 6th floor. I was anxious to see my room for the first time. Ah, Room 622, home away from home.
Here are some of the wonderful ammenities of Room 622.
A 'spacious' private room, decorated in antiseptic white, with a fabulous view of the 'resort'.


My own bathroom, again decorated in chaste white.
I've got my own bed that is even adjustable, cool! And look a few nice touches from home, a nice cuddly, green blanket and even comfy pillows especially for me.


I have several amazing, friendly 'attendants', that wait on me hand and foot, 24/7. A push of a button summons them to my feet, delivering anything I need. They insist on bringing me all kinds of goodie bags, every 6 hours.


I also have 24/7 room service, with respectable food. Like clockwork, my meals are delivered right to my lap . . . talk about service . . . breakfast in bed!!! (and lunch and dinner too.)

My vacation will last at least a week, maybe 2, depending on how long the boss 'lets' me stay. I plan on catching up on reading and cleaning out my computer. Here's me relaxing the day away in my luxurious surroundings.


Hope you enjoyed my vacation photos, you should visit here someday soon!!

Ok, Ok ya got me! 

You want the real story?

I've been feeling pretty rough the last month. As much as I try to hide how bad I feel, apparently everyone close to me can see right through the facade. It is hard to hide shortness of breath, constant coughing, and just plain NO energy.

I made a Doc appointment for Nov. 10th, about a week into the "I don't feel so hot month." My PFT (pulmonary function tests) numbers were down, but not drastically. Lungs sounded junky, but they've been worse. My weight and appetite stable. Doc didn't want to start antibiotics just yet, instead he increased my home breathing treatments to 3 a day to see if that does the trick. Go back on 12-1, re-evaluate, and then decide if it's time for a tune up.

I know my body and symptoms, when it's time for a tune up of IV drugs. I KNOW when I get SOB going up the stairs at home, that is an indicator that something evil is brewing, needing attention. Coughing fits until pass out or throw up is NOT my idea of fun. And feeling like I have severe flu for a solid month, that I know won't go away, is not an option. Oh heck, even Terry knows when I've crossed that imaginary line of no return. The guest bed or the downstairs recliner sofa gets plenty of use from one of us, when I cough uncontrollably all night long, he he.

My 12-1 appt rolls around, and sure enough, I'm feeling more lousy than ever. I leave home prepared, loaded down with packed bags, fully expecting a 2 week stay. My PFTs are down even further, thrusting me into the never-before-visited-40s% lung function. A number that scares the jeebers out of me. I've been in the 50s for 8 years now, slipping into the lower decade of numbers is clearly NOT something I want. Thankfully my doc agreed, he admitted me, and I hussle my butt and bags across the street, tail tucked between my legs. Honestly, when I get to this point of downward spiral, I almost look forward to a round of IVs, just so I can feel better.

I'm now 5 days in and I'm responding well to the IV cocktail of 2 drugs. My cough has all but disappeared. My restlessness makes me feel like a caged animal, pacing the hallways, looking for a hole to escape. Thankfully, USC does let us go outside in between treatments. Terry and I went down to the cafeteria today, ordered lunch to go and ate outside in the glorious sunshine.

The plan is to keep me locked up until Monday 12-8, do more PFTs to see if I've improved. If so, the doc says I can go home the second week and finish up the IVs.

YAY!
My vacation just might be cut short, fine by me.

Sleep here I come.