Kathy has a smile on her face.

AM/ I'm taking Kathy to her new doctor today at noon. She has not been 100% since we returned from Houston. We're hoping this doctor will listen to her, run a battery of tests and help her feel better.

My cancer doctor has moved my visit from this week to next... no labs this week! I know my body so well now that if I need red blood or platelets I know to rush for labs right away.
My next scheduled trip to MD Anderson in Houston is Feb 18-19.
The chemo pills will be completed on Jan 22nd so we'll see what my blood numbers are saying at that time. I am focused on Kathy's health as well as mine.

PM/ The results of Kathy's visit with her new doctor were....well, I can say she has finally found someone who understands her. She has set in motion some much needed tests over the next month. Actually, the doctor seemed like she had seen many women like Kathy and instinctly knew right away what to do. She emphasized that stress can put our systems completely out of whack to a point we begin to actually take on serious medical problems. Stress!

Kathy and I are so grateful to Pat and Bob for sharing their wonderful doctor. It just means the world. JW

One Night Out

Labs and a visit with my cancer doctor found me packing for a night at the hospital. The order was for 2-units of red blood and 3-units of platelets. The check-in at 5pm was easy to make as I ran home to collect my computer and jammies and drive thru McDonald's on my way to admissions.
However I laid in bed until 9pm before anyone stuck me! The whole process took until 6am this morning. I'll meet with the Hospital Administration in a day or two and see if we can condense this process.
Now that's off my chest I can say "Thank you" to the people who gave up 4-5 hours of their life to do blood aphresis to save my life. We don't know each other but I know first hand what a commitment this process takes.
We're trying to stretch the hospital visits as each is a $500 deductable. Next visit in two weeks. JW

Being Curious is inspirational!

Listen to this more than once.
Trust me.
You'll get it.
LV

Three Days and Counting

Ok, so I started the chemo pills on Thursday. No problems the first day. This pill treatment is taken early in the morning on an empty stomach. However, I felt like I had the flu on the second day. Kathy and I were shopping at Smith's when she turned to me and asked if we could just go home? We couldn't get their fast enough.

She nursed me with comfort drugs, hot potato soup and a heating pad. Both of us felt better by bedtime. This third day of chemo is just headaches, but they are managable. I have two more days on these pills and then I will return to Houston on the 19th.

We're trying to have a normal Sunday and watch some terrific football.
Go Chargers!!!
JW

Falling into a medical abyss

I read this article in Newsweek recently...
it struck close to home. Thought I would share it with you all on the blog. JW

Living with a rare disease is a little like being an orphan. But one doctor has helped me find a home.

Some days I wish I had cancer. I'm even tempted to tell casual acquaintances that I have cancer, because when I say "severe aplastic anemia" they look at me blankly, or they reply that their aunt Sheila has anemia or, worse, they say, "Thank God you don't have cancer." That's what the hematologist said after reviewing my bone-marrow biopsy: "The good news is, you don't have leukemia."

I run my uncle's internal-medicine practice, so I see cancer patients and survivors all the time. There isn't much that shocks or frightens anymore in this exhibitionist age, but there's one bridge that everyone still trembles before: cancer.

Yet during my first trip to the oncology ward—oncology because there are no wards for aplastic anemia—four successive roommates, all leukemia patients, returned to their lives after receiving treatment while I stayed and reflected on mine.

Aplastic anemia is a noncontagious disease in which, for unknown reasons, the body's immune system destroys newly formed blood cells in the bone marrow, causing life-threatening anemia and high risk of infection and hemorrhage. When you have a rare disease like mine, you don't fall through the cracks in the system—you fall through a gaping abyss. There is no money for what you have, no telethons, no support groups, no ribbons of camaraderie. Because there is no profit in developing and testing drugs for rare diseases, they've been lumped together as "orphan" maladies, much as real orphans are crowded together in one place to be more efficiently cared for. And the metaphor of being an orphan feels all too real, as if you're abandoned to dark corridors while mansions are constructed to treat diabetes and AIDS and Alzheimer's. When you're an orphan you envy people with families, even such horrific families as cancer.

But there's one glowing advantage to having a rare disease that perhaps redeems all the rest. You never have to wait for an appointment. There may be only a handful of specialists in the entire country familiar with your disease, and you may have to endure hardships to reach them, but they'll see you right away, and they won't have to look at your chart to remember your name.

After I was diagnosed last April, Dr. Jaroslaw Maciejewski, a Polish-born researcher at the Cleveland Clinic, offered me an appointment in three days, and even then apologized for not being available sooner. My parents drove me two and a half hours to the steel-and-glass structure on the Cleveland Clinic campus called the Taussig Cancer Center, because there are no buildings for aplastic anemia. As a child I had reveled in my nonconformity, but now, at 46, I wanted to meet people just like me. Instead I saw two floors of pale women in headscarves, and wheezing men with canes or walkers. Yet many of these beleaguered patients were in remission, and all of them, I realized, despite their obvious suffering and my deceptively normal appearance, might outlive me.

Patients are often tossed from doctor to doctor and given little time. I got two doctors. First a fellow came to take my history and examine me. Not a student or resident but a hematologist-in-training rotating through this specialty clinic and serving as a kind of Watson to Maciejewski's Holmes. That was my first impression of the idiosyncratic doctor as he burst into the room, shook my hand and leaned against the sink, his hands empty, his hair tousled, his blue eyes piercing yet not unkind, and began, as though we had long been friends, "So, Mark, tell me …"

He spent more than an hour with me, patiently explaining my options, the history of the disease, the current state of research. Thirty years ago the severe form was always fatal, but now it can be pushed into remission or even cured by a bone-marrow transplant or less risky immunosuppressant treatments. When my mom let slip that I was a writer, the doctor's eyes lit up and he implored me to write a story about scientists, a thriller, filled with intrigue. Not the sort of tale to give a new patient confidence, but that was the best thing of all, not to be treated as a patient.

So wear your ribbons and watch your telethons, but know that your cures might be born in an orphanage like Maciejewski's. And even if they aren't, these doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one.

Schreiber lives in Columbus, Ohio.

NEWSWEEK
Jan 12, 2008

4-Days and Waiting

Kathy sent me off to Houston this last Monday and Tuesday for treatments that started at 7am Tuesday morning. I returned home that evening around sundown. All the tests were completed but the numbers from the bone marrow were not finished. Wednesday you could find me at my local hospital, Southern Hills, with 2 and 2 - blood components until the wee hours this morning.

So, I'm working from my home office today and taking a break from all the running and scheduling. Kathy and I are waiting for a call from Houston to see how my bone marrow tests are looking and what direction they recommend. Some news I did receive is that my blasts cells have dropped from 30% to 20% - it is good news but...don't get too excited...they should be less than 5%.

We'll know more after the doctors have put their heads together and call us. I have the next round of chemo pills setting on my desk; I won't have to travel back for them should I need to begin another regime. I'll have more to this post after the call. JW

6-Day Delay

Well, we took down the Christmas decorations on the 4th as it was predicted to rain for 4-days (I think we got 4-drops on 1-day). But the job is done and packed away for another year. Hope I'm here next year to do it again!
Busy at work with verifying jackpot payouts and preparing for our annual Bingo World in March.
I completed labs, a doctors visit and an overnight stay in the hospital for 2-blood and 2-platelets units on Tuesday... that made for a short next day. I'm going back for labs on Friday to make sure I'm ready for the trip to MD Anderson in Houston next Monday and Tuesday.
Temps this weekend should be in the 60's and it will feel good to have the house open and welcome in some sunshine - hope your weekend is ideal! JW

Holiday Leftovers

My lab results from last Wednesday indicated that no blood transfusions were necessary this week. I'll return next Tuesday for labs and keep up the blog news.
Meanwhile, I worked a 9-hour day yesterday! One of our casinos is starting 2-games and working all the kinks out has taken some doing.
Kathy and I canceled dinner (for the 3rd time) last night. The hostess, Greta (we know each other on the phone now) said just to call any day rather than trying to set something up in advance.
Christmas week was busy and full of family and friends. January will be a little lonlier. I will miss having family around. Our goal is to get Julye and our newest grand daughter out here for another visit. Mom & Dad, Tony & Billie, Shawn and of course Laura and her family coming to LV March-April-May.
I travel to MD Anderson on the 14th of this month for tests on the 15th. I will be making this a 2-day trip this time rather than an 18-hour day.
My best friend, wife and care giver, Kathy is not doing well and is seeing the doctor this morning. I've probably finally worn her out- I'm told I'm very needy. Maybe some good rest and warm thoughts from our friends will help get her back on her feet. JW