'Til Death Do Them Part

This stuff is complicated and I am trying to learn what it means!

The eye of my cat, Timmy

What is the Philadelphia Chromosome and what does it have to do with me?

The chromosome abnormality that causes chronic myeloid leukemia (CML). Abbreviated as the Ph chromosome. I have this in my bone marrow. It is not normal to have it.

The Ph chromosome is an abnormally short chromosome 22 that is one of the two chromosomes involved in a translocation (an exchange of material) with chromosome 9.

To the best of my understanding chromosome 22 has divorced it's partner and is now marrying chromosome 9. They cannot get divorced. They will reside in my body until I die.

This translocation takes place in a single bone marrow cell and, through the process of the production of many cells from this one mutant cell, it gives rise to the leukemia.

The discovery in Philadelphia in 1960 of the Ph chromosome was a landmark. It was the first consistent chromosome abnormality found in any kind of malignancy. Now other cancers are being identified genetically.

The discovery led to the identification in CML cells of the BCR-ABL fusion gene and its corresponding protein. ABL and BCR are normal genes on chromosomes 9 and 22, respectively. 

The ABL gene encodes a tyrosine kinase enzyme whose activity is tightly regulated (controlled). In the formation of the Ph translocation, two fusion genes are generated: BCR-ABL on the Ph chromosome and ABL-BCR on the chromosome 9 participating in the translocation. 

The BCR-ABL gene encodes a protein with deregulated (uncontrolled) tyrosine kinase activity. The presence of this protein in the CML cells is strong evidence of its pathogenetic (disease-causing) role. 

The efficacy in CML of a drug that inhibits the BCR-ABL tyrosine kinase has provided the final proof that the BCR-ABL oncoprotein is the unique cause of CML.

The Ph chromosome is also found in a form of acute lymphoblastic leukemia (ALL). It seems highly probable that this form of ALL is due to the same chromosomal and molecular mechanisms as CML.

What is Chronic Myelogenous Leukemia?

Chronic myeloid leukemia (CML), also known as chronic myelogenous leukemia, is a type of cancer that starts in the blood-forming cells of the bone marrow and invades the blood.

 

Both names mean the same thing, but my doctor is calling it Chronic Myelogenous Leukemia, so I'm going to go along with him on this.

It is usually associated with a chromosome abnormality called the Philadelphia chromosome. In CML, leukemia cells tend to build up in the body over time, but in many cases people don't have any symptoms for at least a few years. 

I can look back on old blood tests from two years ago that indicated something was going haywire with my blood cells. It was thought I had infections at the time. I don't blame my doctors It is a common diagnosis for those types of blood results. At that time I did not have the increase in myelocytes that would have made the diagnosis more obvious. (more on myelocytes later) NOTE: Get copies of all your test results! You are legally entitled to them.

In time, the cells can also invade other parts of the body, including the spleen. CML can also change into a fast-growing acute leukemia that invades almost any organ in the body.

I do not have an enlarged spleen. That has been proven by CT scans. My CML has been diagnosed early, so it is not expected that I will have any aggressiveness coming up any time soon. 

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Photo is of myself in 2004, taken in Monterey, California. I remember the wind was blowing off from the ocean. It was a cold sunny day.

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This is part of an article from Scientific News as published in ACOR. I cannot find the original reference.

Un-Results

Waiting for the doctor to call to give me some results on my bone marrow biopsy. Waiting, waiting. Then the time comes to leave for San Francisco to see the mouth specialist to check the progress on my OLP.

Kats is driving and I'm checking my cellphone to see if a call had come through and I hadn't heard it. Then I notice the battery is dead! I call the clinic from Kats' cell to tell them to have the doctor call his phone. I explain the situation.

"So sorry Dr. Wong is not here today"

"But, he was supposed to call me and tell me some results today. He thought some might be in by now. Maybe they didn't come in and that's why he didn't call. Can  you check and see?"

On hold

"I don't see any results in your chart yet, but if you like, we can have Dr. Wu call you as soon as they come in. Dr. Wu is in the office today."

"Yes. Yes. That will work" and I provide the number for Kats' cell. I hang up and start to cry.

We are driving on a curvy mountainous road (Highway 17) in the midst of traffic. The cops are sitting on the edge of the road with their radar guns going. Too many people speed on this highway, crash their cars, and get killed, or kill others. Driving this road can be harrowing at certain times of the day. We are in that targeted time slot.

"Why are you crying?" Kats asked.

I dry my tears, blow my nose. "I don't know. It's silly really. It doesn't matter whether I get the results today or not. I don't have a computer with me to research what the results would mean."

"You can use my iPad.It's in the back seat" he says. But, we wouldn't have any internet access, so I say, "Yeah, Let's play Angry Birds!" and we laugh.

Why not find something silly to laugh about? Crying isn't going to change the situation except perhaps bring me down into misery. I can do that real well, if I let myself. Not necessary! Ain't doing that! I have a choice how I want to be. Perhaps some other time I wont have the control to stop it, but today, I can.

I'm feeling such a dunce. I run an online support group for chondrosarcoma patients. I know a lot about bone cancer, but nothing about Leukemias. It's like knowing a lot about riding a bicycle, but not a thing about shearing sheep. Riding a bike was important to me once. But now shearing sheep is a life or death matter! Okay, not that bad. But I can't leave a stone unturned. I like to know ALL the facts, even the ugly ones, even if they may never affect me. I'm like the kid who counts all the Cheerios in the box, lining them up on the table before he eats his breakfast. I want to check it all out.

In the case of the blood marrow results. There are certain numbers they are looking for attached to certain alphabets. I want the code. I want to break the code. And I wanted it yesterday! Damn! Why must I wait for my Cheerios?

Granted Dr. Wu may call me on Monday and let me know. He's not my doctor. He's the partner of my doctor. and that's okay by me. I already knew that Dr. Wong would be going out of town until the 17th. I just didn't realize he would be leaving on today... before he would call me. I misunderstood, I guess.

I am a horse at the gate impatiently awaiting the signal. I want to get my self on that fast track. I want to dig my hooves into the dirt and kick up the dust. I want to work up a sweat. I WANT TO KNOW EXACTLY WHAT I AM DEALING WITH!

I hate mysteries!

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First photo taken by my brother, Roger. Second photo taken by me while attending a fundraiser for Sarcoma.

Bone Marrow Biopsy Procedure

I've been so occupied with further testing and just ordinary medical appointments that I haven't had a moment to relax. Well, and... taking care of the Chondrosarcoma group, and hanging out at Facebook, and playing Words With Friends for a little escapism ( WWF is like Scrabble) and attending a writing class. I am also writing my autobiography-memoirs. I intend to publish. I'm about 2/3 of the way through it. I intend to publish.

Years ago when I had CS, cancer was not something discussed with others. in fact it was a shameful secret. I went through the surgeries and healing process without friends even knowing what was going on until the later years of recurrences. Lost a lot of friends that way. People like calls returned and want to go hang out. It was a lonely journey. It feels so good to know I wont be alone on this. My friends are being very supportive.

Last week on the 28th, I had a bone marrow aspiration and biopsy. Kats held my hand, but really didn't need to. It was a really easy and painless procedure. Better than having a tooth extracted. Truly, when the doctor first pressed on me before injecting the numbing stuff, It's what hurt the most, since I have Fibromyalgia. I know there is a lot of talk that it's terrible, but that was not my experience. That is not to say someone else might have a different experience. My behind was numbed out with novacaine. We waited about ten minutes for it to take affect. The doctor inserted (twisted?) a needle into the iliac bone until he reached the bone marrow and aspirated some fluid. Then he used a sort of thick needle to pull out a tiny piece of bone so that it can be sent to a pathologist to further identify what's going on with my Leukemia. I asked to see it, no thicker than a piece of spaghetti and maybe a quarter inch long. I should hear some results by next Friday. The rest will trickle in after that.

Everything points to it being the chronic kind of Leukemia. But I have a million questions. What I'm reading there seem to be different degrees and different genetic aspects regarding staging and so on. With modern treatment, from what my doctor said, my chemo will be in pill form. I will have to take it the rest of my life. As time goes by there will be newer better medication and who knows? possibly a cure. I suspect I will be about 90 by that time. ;-)

I have joined an online CML support group. From reading people's updates, I'm finding that most all do well with their similar chemo.  So, I feel hopeful that my future is assured, as long as I'm not walking down the center divider of a busy freeway and a UFO lands on me. Ha Ha! I know... My sense of humor is warped!

Going over my old medical records (blood tests) and based upon symptoms I've had crop up, it looks like this started manifesting about two years ago. The most annoying symptom is night sweats. Other than sleeping in a vat of ice, I don't know what else to do.

The pictures were taken by Kats in November 1998 when we went to Lake Tahoe.

Bone Marrow Biopsy

Off to have the biopsy today. I'm not sure about why it is necessary, as they already have blood results. I will have to study up on this. 

I was diagnosed with CML last Tuesday as previously mentioned. The Bone Marrow Biopsy is in a couple hours from now without anesthesia. 

When I mentioned this to facebook friends I got a two to one "vote" against it. Four people said don't do it without anesthesia because they had a friend who said so. Two said it was not that bad because that is was their experience through with their ALL (a different type of Leukemia than I have, more severe). 

I got another opinion from a young man in my autobiography writing class who has seven years survival with ALL. He said his first bone marrow biopsy was done without anesthetic when he was a teen and "that it must have been okay" because he doesn't even remember it. Later ones he had were with anesthetic. He doesn't know why.

So, here I go. Hope I won't be sorry that I'm doing this without anesthetic.

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Picture was taken in 1998 by Kats when we went to Lake Tahoe. 

This was in desert area on the way to Reno, Nevada, I believe