The Rest of My Diagnosis Story

After I was finally diagnosed with a blood disorder, possibly leukemia, I had two appointments with my first hematologist. She let me know that she'd set me up with a doctor closer to where I live. I live next to a large city with a major medical center and medical school.

Lucky to live near a specialist

I received a phone call from that center telling me my new oncologist/hematologist would be a CML specialist. chronic myeloid leukemia or CML is a rare blood cancer caused by the translocation of chromosomes 9 and 22. Specialists are difficult to find, especially in my area, and the receptionist told me I was lucky because I would be in good hands.

A difficult, 3-hour visit

My first visit was both vivid and foggy in my mind. My friend was with me--which was helpful and which I highly recommend. To this day, she reminds me of things that I forgot were said.

I remember the visit lasted three hours. By the end of it, I had a raging headache. At the time, I was somewhat clueless as to what it all meant. Plus, I think my attitude toward the doctor wasn't great, to put it mildly. The doctor did his best to explain what was ahead for me medically.

I would start by getting bloodwork three times per week and with a bone marrow biopsy.

Diagram spells out treatment

The CML specialist made a diagram listing the different type of tyrosine kinase inhibitors or TKIs available at the time (there are more now!) TKIs are oral targeted cancer drugs designed to prohibit the growth of the abnormal BCR/ABL gene. He explained that if the first generation drug didn't work, he'd move me to a second generation pill and so on. I could expect to be on the treatment for the rest of my life, he said.

The last resort option is a bone marrow transplant, a procedure he performs.

Balking at treatment recommendations

I balked at the idea of going to the medical center that often for bloodwork. "I can't be running back and forth here every minute, I have a lot of things to do!" I told him.

When he brought up the bone marrow biopsy and what it entailed, I replied, "I don't want to feel God awful, bone-crunching pain!"

When he said I could have the biopsy done that day, my response was: "Not today. You're making my head explode."

As it turned out, I had the bone marrow biopsy the next day to confirm the CML and learn more about my prognosis.

Even though the doctor had to listen to my English major dramatic remarks, I don't want you to think he was taking all the hits. He had a kindred, sarcastic spirit that day and the next one.

He said that pain could be alleviated somewhat by lidocaine, a numbing agent. Of course, that doesn't touch part of the procedure so you have to grin and bear it. The day of the procedure, he showed me a tube, saying, "Look at me filling this all the way to the top with lidocaine so you won't feel so much `God awful, bone-crunching pain!'"

When I complained I might still feel pain, he said, "you can scream."

There was pain, but there was no screaming, just for the record.

Information overload a good thing?

A couple of years ago, five years later, he asked me if I remember telling him I didn't have time to "run back and forth," for appointments there. We both had a laugh about it.

That day, he may have gone into extreme scientific detail with me, drawing cells and chromosomes and charts and explaining things in a very university-style lecture. (Have I mentioned he's a professor at the medical school?) I thought it was information overload back then.

Now, however, I'm grateful he was forthcoming about my condition and what was ahead because too often, I hear about patients who aren't really told a thing about what they have, how it will be treated, side effects, etc.  Knowledge is power, after all.

Glad he tells me the whole truth

So, we have a deal. He looks me in the eyes and tells the truth, no matter how difficult it is to hear.

And, on my end, I've made it clear if I go and have blood drawn and other tests, I want to know what they are for and what the results are--plain and simple. I want them explained.

I will never again accept that lack of communication I experienced pre-diagnosis. I will no longer be dismissed and told things are "all in my head," because clearly it was proven they were not.