Monday, June 28, 2010

Abundant Happiness

This past week provided me with a few challenges. I had some  side effects from my treatment that ranged from bad to alarming. I hope that they are under control now. It is impossible, I guess, to avoid these things when taking such powerful pharmaceuticals. However, I still find myself surprised when these things happen. I think this is because deep down I believe myself impervious to physical ailments. My whole life has been blessed with good health, notwithstanding some car accident injuries. It is still difficult for me to believe that I have very serious health problems. My mind just can’t go there, for some reason. Heck, I still can’t get over the fact that I have to wear glasses to read! Apparently I have a problem with acceptance, hmmm?

I’m taking a 5-day hiatus during my week off treatment to visit with my family in Illinois. It will be great to see all of them. There are always too many things to do and not enough days to do them in, but we will make it work. It doesn’t help that everyone is at least 30 miles apart, or more. The distance between my brother’s and my parents’ house is like driving from Philadelphia to New York. I forget how big Illinois is until I drive between my siblings' homes. Endless distances. Farms. Corn fields. Corn fields. Corn fields. I'm getting sleepy, sleepy….!

Ahh, but those farms have some cool old barns, and I just love them. They have some unique round barns, too! Why they made them round, I have no idea, but they are very interesting and picturesque. Some have those great old wind vanes with horses or pigs, and arrow lightning rods with antique green glass balls for protection (theoretically). I always want to take photos of them when I spot them, and make a coffee table book out of the collection. I find myself slowing down for antiques, even though I don’t have them in my home. And I’m always tempted to get some fresh brown eggs from the farms. That reminds me of Wisconsin summer vacations from my childhood, and brings back that simple happiness that children have in abundance.

So here is wishing you a week of abundant happiness and childhood pleasures.  Enjoy  ; )

Friday, June 25, 2010

Taking It Back

This week has been one of ups and downs. I’ve struggled to keep my equilibrium. One day I feel positive, the next, negative. I might easily chalk it up to the moodiness caused by steroids, but I think I blame them too much.

I have been fighting against this disease literally taking over my life. I wake up in the morning thinking about it, and go to sleep at night thinking about it. I don’t want to do that any more. It cannot be my life. I'm taking my life back. It may seem like one doesn’t have a choice, but we all do. No matter what our situation is, we can live life with the burden chained to our ankle, or we can let it reside in a backpack--a load to carry--but not a ball and chain hindering progress.

My son wakes each day with happiness, a smile on his face. He is such a joy to me. I don’t want to cloud his sunny outlook with my concerns. My husband is a positive person, and he surely deserves to have peace and joy in his life. They inspire me to try harder, to push through these difficulties, and to find the strength to carry my backpack.

Friday, June 18, 2010

Cosmic Contemplations for My Hammock

Another week has passed, enjoyed day by day of course, and I’ve had two more Velcade/dexamethasone treatments that will continue to suppress those plasma cells trying to monopolize my blood. I’m so thankful for such a relatively benign treatment that accomplishes a truly major goal. One would think that such napalm-like devastation of these mutant cells would require something much more like Drano or Raid for Big Bad Bugs. I’m so thankful for this wonder drug that is literally saving my life.
I’ve been reading a wonderful book given to me by my friend, Teri, called Women of Courage, by Katherine Martin. It is fascinating to read about these different women and their differing ways of being courageous. It’s inspiring to hear what others have done, and their stories help me to keep my perspective on life, which is vital to my progress! If you want to be inspired, too, I really recommend it. Also, now that I've read about these women, I want to read some of their books, too.

It looks like we have a great weekend to look forward to, so I’m sharing the things I’ll be thinking about while lying in my hammock.

Mysteries of Life To Contemplate While Semi-awake in My Hammock:
  • Why are kids’ greasy popcorn hands drawn like a magnet to upholstered chairs instead of napkins?
  • Why do people put religious bumper stickers on their car and then cut you off (or worse) in traffic?
  • Why is the blue of the sky so calming?
  • Why does someone inevitably spill something on the floor the same day it gets cleaned?
  • Why do people spend lots of money to travel abroad and then complain that the food and accommodations aren’t like at home, and no one speaks English?
  • Why can’t I sing like Aretha Franklin?
  • Why do I crave hot dogs in the summer, but never in the winter?
.................. Enjoy your weekend!  ;  )

Wednesday, June 9, 2010

Three Down, Three To Go

Yesterday my doctor made me very unhappy. He told me that I still have to go through three more courses of Velcade before I have a stem cell transplant in late September. Although that has been the plan all along, I really thought (there I go, thinking again; bad idea) that since my light chains are now in a proper ratio that Dr. Porter would say, “Good news, you’re ready now!” Not so fast, Ms. Day By Day.

So why do I feel like my term at Bellyache Jail was just extended by three months? I had no reason to expect otherwise. I trust my doctor, completely. However, my Inner Child is screaming, “I want those plasma cells dead, and I want them dead now!” My irrational fears are ruining my calm. Of course Mature Me says, “I will do whatever my doctor says is best and I will cooperate fully with the treatment plan.” But…

I don’t wanna !!!!!   

Okay, I always try to find the silver lining in every cloud. I’m trying hard. So far all I’ve got is this: there won’t be reruns on television in late September when I’m confined to my hospital room. The new programs should be starting by then. Years ago I was in the hospital during the summer (this was way pre-internet, cell phones, etc.), and my only entertainment, a television, was an instrument of torture.  Although I think current television programming is abysmal under the best of circumstances, summer programming truly sets the bar. All I can say is that I hope HUP has the Food Network and HGTV!

Thursday, June 3, 2010

Friends

I made a new friend yesterday. Her name is Cheryl, and she is the first person I’ve ever talked with who also has AL amyloidosis. Cheryl found my blog somewhere (I’ll have to find out where) and contacted me. We have a lot in common besides our dreadful disease. Also, as it turns out, she is an old friend of my doctor at HUP, Dr. Porter. Now how strange is that? I really believe that some people are brought into our lives for a purpose, and Cheryl is definitely one of them. It was so amazing to talk with another woman who knows exactly how I’m feeling (both physically and mentally), what I’m going through now, and what I will have to face in the future. Our medical status is basically the same, and we are going through the same chemo regimens, so we had a lot to talk about. Cheryl is going to begin her stem cell transplant process starting next week, so please say a prayer for my new friend and for her complete and permanent remission.

I also heard from many old (as in long-term, not aged!) friends yesterday. I finally shared my medical condition with my 15 bookclub gal-pals via a group email yesterday. I hadn’t done so yet because I wanted to pretend to be “normal” for as long as possible. But I keep getting sick on Wednesdays--nothing normal about that--and missing bookclub, so I had to ’fess up. (Another confession: a few of them already knew for awhile, due to persistent questioning and my husband's inability to tell white lies.) Since then I have received a tsunami of love and support. This doesn’t surprise me from this group of wonderful women, but it still is heartwarming and very touching. From the bottom of my heart, thank you to all you Ladies of the Lakes. You will get me through this mess, I am sure of it.

In the meantime: Cheryl, you go, girl! You are in my thoughts and prayers.

Wednesday, June 2, 2010

It's Electrifyin'


Understatement: My trip to the hospital yesterday didn’t start out too well. When I arrived, a thunderstorm was just sliding in with ominous black clouds. An extremely loud crack sounded before I got out of my car, and I was getting very anxious about crossing the street before the storm hit. So there I was, about 200 feet from the hospital, when--CRACK--a bolt of lightning struck the top of the hospital! I jumped and screamed and ran as fast as possible since I was mere feet away from where it hit the building. I could swear I felt the electricity in the air. I wondered, is it just me? Have I become a cosmic bad-luck target? Will my picture be in the paper tomorrow?

Once I got inside the building, the fire alarm was BEEP-BEEP-BEEPing away, lights were flashing, “CODE RED, Ground Floor, Coffee shop” was being repeated over the P.A. system (I guess the old cappuccino machine caught fire!); all adding to the wild shaking of my hands and general hair-raising anxiety of the moment. I didn't know what else to do but go to my appointment. I had to go through now-closed fire doors to get to the elevators. But wait…you can’t take elevators during fire alarms!

So I had to take the stairs. FOUR flights. Do you have any idea how huge each flight of stairs is in a hospital? And with my disease I get winded very easily, so I was stopping at each flight gasping like an old geezer. I finally made it up to the fourth floor, where the doors were naturally locked, so I had to bang on them. Old people were looking at my crazed face through the little door window, probably thinking I was some kind of hospital terrorist who sets off fire alarms. Finally someone let me in, and I made it to my appointment, on time no less. With trembling hands, I got my blood pressure taken, and guess what it was? 106/64. The marvels of modern chemistry. They have me on blood pressure medicine because it protects kidneys, but it apparently works really well for my heart, too.

After such an inauspicious arrival, to say the least, I thought it might be a bad omen about my blood test results from last week. However, I got great news. Electrifying news! My blood test showed a tremendous improvement after only 2 rounds of chemo. [For those who want the medical info, my lambda light chains were once over 600; now they are 43, or “within normal limits.”]  I really didn’t know what to expect, but I was hoping for a 50% reduction in light chains. To get what is essentially a complete improvement is beyond belief. My sincerest thanks to all of you for your positive thoughts and prayers that are getting me through this madness, day by day.  : )