How I Was Introduced To CLL – Diagnosis

This article is the second installment of a two-part story describing the details leading up to my diagnosis with Chronic Lymphocytic Leukemia. If you haven’t read part one, you may want to have a look at it first. Introduction to CLL – Part 1

In part 1 I had been admitted to the hospital early on Saturday afternoon in an effort to get to the bottom of a very high white blood cell count. By Sunday a multitude of blood samples had been collected, additional CT scans had been performed, and x-rays of my chest had been taken.

Part 2 – Diagnosis

The x-rays didn’t show any indications of anything unusual, but the cat-scans showed a rather large quantity of enlarged lymph-nodes throughout my body. I never really noticed them before, but the doctor pointed out the fact that there was a lot of swollen tissue in the normal places they would expect to see in someone with my condition: the armpits, the mid-section, and the groin area.

During the 24 hour period since being admitted, my white blood cell count had stabilized to a point where the doctors were ready to release me. They never did say what the exact number was, just that it was much better than the day before.

What seemed most strange to me during the whole ordeal, was the fact that I still felt fine. I spent the entire time sitting around surfing the Internet on my laptop, watching television, and wondering how I was going to make up for the weekend I just lost. Just before my release, I was visited once again by my oncologist. He explained that all indications pointed to CLL, but in order to have a proper diagnosis and plan for treatment, there were more tests that were needed to be performed.

The Biopsy

The following week I was scheduled for a visit with the ear, nose, and throat specialist to analyze the results of the cat-scans of my neck. During the visit I learned that there were a total of 9 affected lymph-nodes in my neck, and the plan was to schedule surgery for the removal of one for a biopsy in two weeks. Once again, I got a phone call at home from the oncologist saying that they didn’t want to wait, and that the surgery was re-scheduled for Friday (in two days!). I was really beginning to notice a trend of urgency throughout this process.

Since I had gone from not having seen a doctor in decades, to having a team of several specialist handling my problem in about a week’s time, I was a little nervous on the day of surgery. This was an outpatient procedure, and before hand I was visited by the surgeon, the assistants, and the anaesthesiologist. Each took the time to explain their role and ask vital questions pertaining to their portion of the surgery.

The procedure was to take about an hour and a half. Because of the swelling and location near my airway, they would be installing a breathing tube, which would probably cause some discomfort for a day or two afterwards. An IV was installed, and I was wheeled into surgery. They let me know that I was about to receive some medication, and that was the last thing I remember until I woke up in the recovery room. It took about an hour for me to get past the grogginess, and prepare to go home.

Some Results

A section of the lymph-node was biopsied in the lab locally, with the remainder sent to the Mayo Clinic for a firm conclusion. The initial biopsy showed positive for cancer, and about a week later, I found out that the section sent to Mayo confirmed those results.

The last piece of the diagnostic puzzle requires a bone marrow biopsy. Even though I didn’t know what was involved, the phrase seems to make everyone cringe. Compared to some of the horror stories I heard afterwards involving grown men crying, my oncologist appears to be very talented at performing this procedure with minimal discomfort. Let me be clear – it wasn’t painless, and there’s a certain level of mental creepiness just knowing what they are doing to you. I hope I don’t have to go through this experience again.

The bone marrow biopsy was done in the doctor’s office. This is done using a sort of over-sized needle to remove marrow from inside your bone – in my case a spot in my lower back hip bone. There are several numbing sequences, each going deeper with increasing pain then numbing. The marrow retrieval isn’t necessarily painful, but there is certainly discomfort and a lot of pressure. The device is being forced through the outer case of the bone, and into the softer core tissue. It must be unpleasant to witness. One of the nurses was an intern, and I heard the doctor tell her to take a seat if she thought she was going to faint.

Confirmation – The Next Steps

About a week after the biopsy, the results indicated cancer in my bone marrow. This made my CLL diagnosis official, but all along my doctors were up front and honest about the situation, so I was well prepared for the final disposition.

Now that we have reached this point, the doctor explained the treatment regiment: Chemotherapy – once a month, for 6 months, with additional medication for the following 6 months. The doctor maintains a high level of confidence in putting me into remission with this one-year plan.

The whole process from the day of my first doctor’s visit to a confirmed diagnosis was five weeks. My emotional state went from normal, to frightening uncertainty, to a calming positive confidence instilled by the skill and level of detail exhibited by my doctors through the whole experience. This will certainly be instrumental in making it through treatment with a positive outcome. I started my chemo treatments on week 6.

Please feel free to comment here, or send me an e-mail if you have any questions or want to share your story. I’d like to invite you to continue to follow along as I document the details of my journey.

Thanks for visiting, and be sure to share this with someone who may benefit from it.

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