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The last two weeks have had me in state of discombobulation if there is such a word. I was sitting down to finish writing about our trip to the Dakotas, but all that is filling my mind at the moment are the test results from last week’s bloodwork and the doctor appointments from this week.

I had my normal six-month bloodwork done last week and my doctor appointments this week. If you have been following and reading along, you know that I have a rare form of Leukemia. That’s me, rare everything. Rare Leukemia, rare arthritis, rare Trigeminal Neuralgia. I am almost afraid of going to the doctor and hearing I have contracted another rare something or other. And, being a female INTJ, I have the rarest personality in the world. Yep! If you include men and women, it drops to second or third, but female INTJs are the rarest. My husband has used this both lovingly and sarcastically, depending on what is happening at the time. I’m a regular Lucille Ball so I’m sure you can figure it out.

Getting back to the bloodwork. When you’ve been stuck as many times as I have, you also learn to read the blood results and I have been tracking my platelets and red cells for about five years now. I noticed that my platelet count had started coming down and was well within the normal range, then in the lower half of normal, and then even closer to the bottom line normal. My red cells lowered but were okay. I even asked at my appointment in March about the possibility of discontinuing the chemo drugs. The doctor said I would need to take them for at least ten years before even considering discontinuing them. I might add here that you need to be your own advocate.

My doctor retired, bless his heart I hope he’s enjoying his retirement and I have a new doctor. I met with her in March and then on Monday I was scheduled with a nurse practitioner, which I questioned and then realized I was okay with it because I didn’t think I was in any danger. Let me say and then repeat, it is sometimes good to see someone different, repeat. We spoke for a while and she started looking over my numbers and then it got serious. I am on medication that affects my memory so I’m glad she picked up on the numbers. I was already questioning them and had already forgotten to ask about them.

Right away, she said these aren’t good. Your platelets are in what we refer to as the “danger zone” and your white cells are in the “danger zone.” The red cells are lower, but still okay. Both my platelets and white cells are below normal. She immediately told me she had to speak to the doctor about decreasing my meds. When she returned, she told me to cut my meds in half and the doctor wanted to have bloodwork done in four weeks to make sure my numbers weren’t spiking. She said that we couldn’t wait the six months. It was too far out.

That was it. She couldn’t answer questions about what if it spiked? What would happen? My mind was whirling. We said goodbye and I left. I had so many emotions inside. After I got over the initial shock of how serious this was, I began to get angry. If I had noticed the extreme drop, surely they had. That’s what they do! Then, I got angry at myself, because I should have said something at the previous visit but the doctor had looked at the numbers.

This was all after my first visit of the day to my Primary doctor. I am not someone who cries at the drop of hat, but it seems now if anyone asks me how I’m doing, the tears start. Everywhere I went on Monday, they handed me a box of Kleenex. The meds that I am taking for the Trigeminal Neuralgia have me confused at times. They are affecting my short term memory (because goodness knows I’ve remembered things from thirty and forty years ago)!  And my anxiety and depression have worsened. In other words, just generally discombobulated. And, I’m not sure how much the meds are helping the TN. I guess I’d have to stop taking them to see if they are and besides making me scared to death that the pain will worsen, the pharmacist told me it would be a long process. The doctor would have to do calculations on how to cut the dosage to wean me off. Who knew all those formulas we learned in high school would come in handy?!

So, the doctor walks in all smiling and asks how are you today? Cue the tears and the box of Kleenex! She asked about the TN and if I felt the meds were working. I explained that I wasn’t sure but the side effects were. After a lot of discussion about the side effects, she wanted to prescribe another drug that would help with the depression and anxiety and also the nerve, but only if I wanted to try it. What we are hoping is this drug will work and we can begin to wean me off of the carbamazepine.  I decided to try it because as I said, I’m not sure if the carbamazepine is working. I am still having the painful nerve shocks but fortunately not the episodes of pain where it feels like someone threw acid on my face. She told me she wanted to closely monitor me and I have a follow-up in three weeks. She has another patient who also has TN so she is familiar with the disease. The other woman had a procedure done due to the tremendous pain, and my doctor said it may have helped a little. I wish there was a support group because I think it would be helpful to speak to others suffering from TN to isolate what symptoms we share and how they might differ or be in common and then the different treatments we may be doing. Only someone suffering from TN can fully understand what the other is going through.

That afternoon I remember leaving the Cancer Center at Ochsner. They have been adding on to the center and opened up a new entrance since my last visit so I was a little thrown by the changes when I walked in. It is a beautiful entrance and it was evident where the information center will be – eventually. Due to the meds, it took me a little longer than usual to orient myself. I was thinking there really should be arrows! I figured it out and found my way to the elevators. But, on the way out I reached a place where I came to a dead stop, literally, and had to either turn left or nowhere. I needed a yellow brick road that day!

So, this was on my mind and heart today. I needed to purge the emotions and thoughts for a while so I can move forward and try not to worry.

What Is Essential Thrombocythemia?

Essential thrombocythemia (ET) is a rare, chronic blood cancer in which a person’s bone marrow makes too many blood platelets (also known as thrombocytes).

Rare condition where the body makes too many blood platelets.

Too many platelets may make it hard for the blood to flow.

About half of people with ET have a mutation—or change—in a certain gene in the body.

Platelets travel through the body’s blood vessels. When a person damages a blood vessel—through a cut, for instance—platelets stick together to form clots and stop the bleeding. In people with ET, the bone marrow makes too many platelets, making it hard for the blood to flow. Unnecessary clots may form, and/or bleeding may increase.

Clotting can lead to serious health problems, like heart attack or stroke.