Sunday, February 28, 2010

Think Spring!

Photographs from our daughters' recent trip to Catalina, California.

Friday, February 26, 2010

Update & Request for Prayer: February 26, 2010

I have hesitated to post much lately. There has been much going on with my health challenges. The stomach virus of early February took almost three weeks to completely resolve. That, in turn, fouled up my metabolic panel and electrolytes. My doctor said we were very fortunate we managed that infection as an outpatient. After taking prescription potassium, etc. my metabolic panel has improved at last.

I saw the doctor on Wednesday. I had been coughing, had ear pain, and other symptoms for a couple of days. I have been running a temperature since Tuesday. The doctor said I have fluid in my ears and my chest has congestion.Yesterday, I had chest pains throughout the day. Today I had a chest x-ray and it did not reveal any pneumonia.

Most concerning are my CBC results. I didn't report last week when I had a decline in my neutrophil count (after it being normal since I began using the Vitamin B3). I had missed over 50 percent of the doses the week or so before the last CBC due to the stomach virus induced nausea causing it to be impossible to keep all of my medicines down. We were hopeful that it was a minor blip of my ANC and that this week it would recover (as I increased to my previous B3 dose).

Unfortunately, I am neutropenic again this week. We held on the Neupogen until we rechecked the neutrophils today. I do not yet have those results.

My doctor does suspect that I may not be absorbing nutrients - additional testing is in order to determine if this is the cause. I hope that malabsorption is not a new problem, but it would explain why iron, B3 and D3 supplementations are struggling to benefit me.

My platelets dropped by over 20,000 in one week. They are at 70,000 (normal 130,000 to 400,000). As I drove home after my doctor's appointment and acupuncture, my back felt strange. When I got home, Kevin looked and I had a hematoma and my back was bleeding from one of the acupuncture needles. I knew then that my platelets must have declined as I have never had this problem before with acupuncture needles.

Despite two weeks' worth of prescription iron, my hemoglobin is not budging from its new "home" at 9.0 (normal 12-16). No wonder I am tired all of the time .......

The nerve damage in my lower right leg/foot continues to worsen and as soon as I am able, I am to be fitted for a new brace to try out to see if it improves my stability and the loss of muscle control in that leg/foot.

Please pray.

Friday, February 12, 2010

An Update & Praise for February 12, 2010

The stomach villain continued to strike after my last update. My husband, daughter, son-in-law, and mom all succumbed to this virus. Fortunately, everyone is recovering and all of us hope that this virus takes up residence elsewhere, for a very long time.

I have reported on my discovery of some research that suggested that Vitamin B3 could improve neutrophil counts. For my regular readers, you know that for nearly a year I have battled neutropenia and required frequent injections of Neupogen to improve these counts and my body's ability to fight infection.

Since beginning the fairly high doses of Vitamin B3, my neutropenia has disappeared! I have not required Neupogen injections for over two weeks now! Sometimes science ignores the simple, safe, inexpensive solutions to very complicated problems. My $5.00 bottle of Vitamin B3 will last for about ten days. Ten days worth of Neupogen injections cost $4500.00. I doubt that big pharmaceutical will embrace this research since no profit is to be gained from a simple Vitamin B3 capsule.

For today, I am rejoicing. I praise God for directing me to this research. I thank Him for giving me a safe, affordable solution to a very serious problem. Neutropenia can open the door to life-threatening infections. For today, God has utilized Vitamin B3 to slam the door on those lurking infections and has enforced and enlarged my army of neutrophils. Thanks, God, You are a great friend!

Tuesday, February 9, 2010

Snow Bunny

The little snow bunny turns 17 months old! Today is frigid and snowy - and even Lil Man knows how much his Grammy loves the snow. With a break in the snow showers, I bundled him up in his snow suit, mittens and coat and off we went into the wild blue yonder. We decided to celebrate his birthday with his first sledding trip down the big hill. With Lil Man's great grandparents as onlookers, I sat him on my lap, crossed my leg and away we went on the saucer sled. His big brown eyes grew even bigger as the snow licked his face on the ride down the hill. Great Grandpa and Grandma even took their turns down the icy slope. This same hill had welcomed my winter trips as a child and then the sledding parties of our own daughters. Another generation made his maiden voyage today on his 17 month birthday! In the words of Lil Man, "Brrrrrr!"

He loves snow - he calls it "balls", I interpret that as his shortened version of snowballs! Whenever it snows, I gather a plastic bowl of snow for him and bring it inside. We form little "balls" and make miniature snowmen. Then Lil Man takes a few frigid bites of snow and his tongue tingles with cold. And the snow slowly melts before our eyes.

I told Lil Man that we are true Olympians now - trained and ready to join the US bobsled team for the upcoming Vancouver Olympics! I am certain he would win a gold medal because everything he does is so perfect in the opinion of his Grammy!

Happy 17 month Birthday, Lil Man! Grammy loves you.

Thursday, February 4, 2010

An Update & Request for Prayer: February 4, 2010

The stomach virus struck with a vengeance this week. Four family members, including yours truly, have fallen victims. Please pray as I have lost 8 pounds in two days and have not been able to eat or drink since Tuesday.

We have debated if the benefits of being admitted to the hospital for IV hydration would outweigh the risks of exposure to other hospital germs. I am walking a tightrope right now, trying to regain strength and not become severely dehydrated as I battle the bug while still at home. I had some UTI symptoms overnight, so I am waiting on the results of a urine culture.

Monday, February 1, 2010

An Update & Request for Prayer: February 1, 2010

I have always pondered how much pain the human body can endure and I think I might have reached my limit overnight. I was up crying all night. In addition to the "normal" pain from my enlarged spleen/herniated discs/and leukemia packed vertebrae and hips, the lower right leg and foot pain (nerve damaged from herniated disc) peaked.

I have foot drop (dorsiflexion) from the nerve damage from the herniated discs from the steroid use for the leukemia. Isn't it amazing the downward spiral a drug or condition can throw the human body into?

The doctor told me last night week that I was losing one group of muscles in my lower leg. On Sunday morning, my foot locked in the "dropped" position when I awoke -toe pointed out - and Kevin had to literally snap it back into place. Overnight that continued and the foot began twisting sideways in contorted cramps.

Today, my doctor strongly recommended that I make my decision on what pain medicine I am going to begin. It is a battle to select one with my past history of anaphylaxis and complications with NSAIDs and codeine and morphine rashes. She recommended Fentynyl or Oxycontin.

I will have a CBC tomorrow to see if I require Neupogen. It is the first full week I have gone without an injection while on the Vitamin B3 - I think it will be telling if the B3 has improved the neutropenia.

The fevers continue. We are rotating some drugs around for the (assumed) sinus infection. If temperatures do not stop in a few days, I will have to go to Indy to the ENT for a scope to obtain sterile cultures.

I awoke with an infection in my right eye - the doctor prescribed Tobramycin eye drops.

An MRI on my lower leg/foot, a check of my magnesium levels, and a possible pain management consultation are all possibilities on the ever-growing Medical To Do list.

Last week, my unrelenting research uncovered a new drug being studied in very early clinical trials that might benefit me. ISF35 is an immunotherapy drug - thus, it shouldn't induce more immune suppression for me. Cells are removed from my own body, manipulated in the laboratory and reinfused into my body in an attempt to prompt my immune system to attack the leukemia.

Two end-stage patients have received minimal residual disease negative (MRD-) remissions (deepest remission with this type of leukemia) with this drug. Unfortunately, the two current trials are in California and Texas - both requiring a great deal of cumbersome travel. Today I heard from a Memgen executive (pharmaceutical company where ISF35 is produced). He told me that more funding has been received for ISF35 trials and more ISF35 trials will open -perhaps one in Indianapolis in late spring. God knows best what I need.

Thank you for your prayers. I don't know if I can make it through another night like last night on my own strength - but I can with God's strength and comfort!