What Are The Chances?

Late for the first day of class, I took the only seat available next to a mysterious young man wearing a dark trench coat and classic fedora hat. He glanced up to acknowledge my presence as the instructor introduced us to the schedule for writing our memoirs. It was then I realized my seat partner was probably very ill. Cancer perhaps. He was not just slender or thin. His appearance was emaciated  His skin more than pale. It was almost see-through. What little hair he had was sticking out beneath the hat was like peach fuzz. Like me, he had come to class to write his life story.

That first day we had a writing exercise and read to each other. My guess about Greg was correct. He was recovering from Leukemia. His story had begun several years before when he was still in high school. He'd been through his treatments, and was in remission when we met. I told him about my having had a rare bone cancer forty years before when I was about his age. There was an easy acceptance between us that I can only describe as a knowing sigh or shared exhalation that no one else in the room could discern. We were both survivors!

Twice a week for that first three weeks we shared our writings with each other, and sometimes with other members of the class. That fourth week I went to class with a heavy heart. My doctor had sent me to an oncologist. I had been diagnosed with Leukemia. It's a fairly rare cancer. According to government statistics for that year, in the US there were approximately 271,880 people alive who had a history of leukemia. In the county where I live there were only 32 Leukemia patients. It seemed so odd to realize that the two of us attended the same college, the same class and sat beside each other. What are the chances of that happening?

Though mine was a different type of Leukemia than Greg's, we had one thing in common called the Philadelphia Chromosome. I had no idea what that was, but Greg explained. A couple times after class we would stop and chat. He was always willing to help me understand. What was incomprehensibly new to me was old stuff to him. He asked me questions, good questions that made me think, that made me take to my doctor to get answered. We shared symptoms and how we handled them. We shared the emotional impact. He told me funny stories too, told me about Jacob's Heart, and Team in Training and Robin Williams coming to visit him in the hospital who had him laughing. His eyes lighted up when he spoke of these things. A fire burned there shining from his soul.

One day on campus, I saw him climbing a steep flight of stairs. That was something I couldn't do, and it surprised me. He seemed so frail beneath that trench coat, but there was a superman inside. He had been fighting his Leukemia for a number of years. He had suffered the ravages of chemotherapy. He'd had a bone marrow transplant. He'd been bedridden and close to death. He had recovered, recuperated and healed. Why would climbing stairs be a daunting thing for him when he already had the strength to beat cancer? I was encouraged for my own future. I was uplifted by his spirit of not giving into weakness. I was inspired to let my leukemia journey to just become another of life's challenges and not let it become something to destroy who I really am.

Today, another student from that class asked me if I remembered Greg. Of course I did. I was numb when she told me he had died just a few weeks ago. She had seen his obituary in the local paper.

I went on the internet tonight looking for his obituary. I found one for a Gregory Melendy. But, I couldn't make myself believe it was him. Some other young man with the same name had passed away. I studied the picture. Long hair, healthy sensitive face. Nope. Not my Greg. My friend must be mistaken. I looked harder at the picture. Read the obituary again.

There... a link.... saying to make donations to a music scholarship. I clicked on that page. Another young man, no hair this time. But full of face, smiling. I stared at it. The eyes. Maybe the eyes are familiar, I thought. No... it must be someone else with the same name. Just a coincidence that he attended the same college where I had met my Greg. Just a coincidence.

I stuck to my denial as I searched and read all the pages Google took me to see. I studied each picture. Finally it sank in. It was my Greg Melendy.

I am very sad.

What You Don't Know Can Kill You

Since being diagnosed with CML my blood lipids climbed. The reason why? Because I could no longer take any statin medication to keep it healthy.

Statins are contraindicated with Dasatinib (Sprycel) which is the chemo drug I am taking. It is because of the way they are absorbed in the body through the liver. To keep the explanation simple, just imagine a turnstile and two people attempting to go through it at once. Statins are the bully to pushes Dasatinib out of the way to pass through the turnstile. So your body never absorbs the dosage you are supposed to be taking to treat the leukemia.

That becomes a bit of a quandary.

Keeping things in the dark is not healthy!

When I began treatment, all of my standard medications that were also bullys got taken away. Without statins, my lipid counts shot upwards into unsafe levels. Considering that my tummy didn't like the chemo and I immediately lost a lot of weight due to ongoing nausea, one would think my cholesterol would not have climbed. I stuck to a heart healthy diet with lots of fruits and vegetables and no junk food, it didn't help. (I couldn't have eaten junk food even if I wanted to.) Though, admittedly, because of ongoing nausea, some nutrients were not absorbed. Still, I was shocked with what happened to my lipids.

I was very frustrated, unhappy and annoyed. Especially annoyed. With continued high lipids to challenge my heart health, it began to look like I would have more medical problems to deal with! Believe me, I've got enough diagnoses to educate a med school student. Was there nothing more to be done?

I researched information on Dasatinib. I contacted the maker, Bristol-Myers Squibb to see if they could recommend something. No, they said to talk to my doctor. My primary care doctor was adamant that all I could do was to keep to a healthy diet. My oncologist could not give me any suggestions.

Why would a drug manufacturer not have some kind of suggestion? I understand why my primary care doctor could only advocate diet and fiber. Prescribing chemo drugs was not in her realm. And why hadn't my oncologist investigated further to see what else could be done? It all seemed quite irresponsible to me. I wondered how many other patients go through this and feel helpless. How many just go along with the situation and accept things as they are? No, don't tell me. I don't really want to know. I really wish that there could be classes one could take to become a more savvy medical consumer.

I've learned over the decades while dealing with my myriad of medical problems that if I don't keep a watchful eye on things, mistakes can happen. I wanted to solve this dilemma of the lack of a safe drug to take. The more I researched the more I learned. Pravastatin is okay to take for a person who is taking Dasatinib! Pravastatin is NOT A Bully!

I presented my doctors with the evidence and now I have taken Pravastatin for two months. I am so relieved and happy. Look at the results:

Chart

Component	Standard Range	1/16/2012	2/2/2012	7/9/2012	3/1/2013
Total cholesterol		289 H	274 H	249 H	192
Triglyceride		276 H	308 H	221 H	125
HDL cholesterol		47	44	35 L	57
LDL Calculated		187 H	168 H	170 H	110
VLDL (Calculated)	5.0-40.0 mg/dL	55 H	62 H	44 H	25
Cholesterol to HDL Ratio		6.1 H	6.2 H	7.1 H	3.4

Vanity... Vanity... All is Vanity

Watching Diane Sawyer on the news tonight, it struck me how well she has aged. Granted, she might have had a little "help". But, she still wears her make-up well. It seems to me that older women, no matter how many nips and tucks or surgical interventions they might have, make-up is a tell tale problem. Even millionaires, no matter how well done the make up, still cannot hide the years.

Oh, I know this sounds petty. Yes, it is. I suppose. But the idea of lost beauty and aging has hit me very hard especially this last few years. I never thought it would be possible I would react this way. I had the attitude I would grow old gracefully and accept the changes as they came. But, that's not what has happened. I've learned I am not without vanity.

2003 at age 58

Since the leukemia diagnosis, my appearance has changed drastically. My skin has dried and my face has wrinkled. Shall I blame the leukemia for the changes? Can I say it is the fault of the chemo drug I'm taking? Could it simply be old age suddenly taking over my body?

The chemo drug definitely affected my skin. Within a few days of beginning it, I got a bumpy rash. My skin suddenly felt like sandpaper. With the help of my dermatologist, I've been able to have a little control over it.

Though the bumpiness is tolerable I shall miss it's previous softness. Like a child's comfort blanket, it has disappeared. Not only that, my skin has gotten very dry.... very, very dry. That most certainly has an aging effect.

Because of the chemo, I've lost a considerable amount of weight. That's a good thing, though. I needed it. However, losing weight, especially as fast as I lost it, causes disappointing results in appearance, too. Where the face was once plump and sassy, it is now sallow and saggy. The body has lost a lot of muscle mass, too. 'Nuff said about that!

2012 at age 67

It's been a bit of an identity crisis for me. I was used to being considered young looking, and still pretty into my late 50's. Received compliments and sometimes even a head turned in my direction with a "come hither" look from men younger than I. Admittedly it was flattering. I didn't know how much it fed my ego. Nor, how I would miss it.

Suddenly, I look in the mirror and I don't know that old woman. It's a shock.

I know I will eventually become familiar with my new appearance, if I will just look in the mirror every day and acknowledge that the face I see is mine.

I think about how frivolous this all is! What am I complaining about?

I am so thankful I was not diagnosed with leukemia before these new tyrosine-kinase inhibitor chemo drugs were created. The first one, Gleevec was approved for use in 2001. Before that, the average length of time someone survived with Chronic Myelogenous Leukemia was about six years. The one I'm taking, Dasatinib, is 325-fold more potent for attacking the CML. My survival is pretty much assured. I should live out my life until I die of something else.

Well, it is what it is. An older woman, a senior citizen... me, complaining of lost beauty and confused about identity. Yet, I'm alive and doing better than I was two years ago when I was in so much bone pain and having night sweats with my blood counts sky high and bone marrow not working right. And still, there is a part of me, a part deep inside, the one that knows without a doubt that I'm really twenty-something. At least it always feels that way.

I remember when my mother was in her eighties and in a nursing home. She complained about the old ladies at the lunch table. Astounded, I blurted out, "Mom! YOU are an old lady!"

We laughed.

Now it's my turn.


“When you are five, you know your age down to the month. Even in your twenties, you know how old you are. I'm twenty-three you say, or maybe twenty-seven. But then in your thirties, something strange starts to happen. It is a mere hiccup at first, an instant of hesitation. How old are you? Oh, I'm--you start confidently, but then you stop. You were going to say thirty-three, but you are not. You're thirty-five. And then you're bothered, because you wonder if this is the beginning of the end. It is, of course, but it's decades before you admit it.” 
― Sara Gruen, Water for Elephants