A certain type of silence follows when the word cancer is said by a doctor.
It is not peaceful. It is the silence of a mind that has stopped to work.
February 17, 2021. I sat there in that silence with a diagnosis of Chronic Myeloid Leukemia. I was 22. I was still finishing my law degree.
There were 15 pills awaiting me at home.
It is not a cancer-beating story. There is also no guaranteed cure to Chronic Myeloid Leukemia. This is a tale of something more difficult to locate: a tranquility within a body that struggles with you each morning.
The War Nobody Prepares You For
The majority of the population envisions cancer as one epic fight. You fight. You win or lose. Credits roll.
The truth about Chronic Myeloid Leukemia is more silent and protracted and in a sense crueler.
You do not fight Chronic Myeloid Leukemia once. You battle it at three in the morning when the bone pain has woke you up. You struggle with it at the time when you stand in court, with sore legs, lying that your body does not deliver distress signals. You combat it when somebody questions you about how you are. and you must choose whether to be honest or not.
I have written about what my life with Chronic Myeloid Leukemia looks like from the outside. The appointments, the routines, the small workarounds that add up to a functional day. But what I want to talk about here is what happens on the inside.
Four Imatinib Tablets daily. That is my maintenance dose. This medication functions by obstructing the protein that commands Chronic Myeloid Leukemia cells to continue multiplying. Yet it is little concerned whether it differentiates cancer cells and the rest of you. Everything was struck down by the side effects.
Nausea as an unwelcome guest. Without warning, muscle cramps come. A haze of the mind so dense that it seemed to read a paragraph was to wade through concrete. Blurred vision. Stomach problems. Arguments with each staircase Joints that bickered.
During the first year my weight decreased to 55 kilograms. I was unable to sleep without heavy medication, and that also had its own price.
That was the physical war. The mental war was harder.
The Thought That Almost Finished Me Before the Cancer Did
This is what most Chronic Myeloid Leukemia content does not actually articulate when it is stating the diagnosis: the diagnosis is a psychological injury.
You hear the name leukemia and your brain is writing an epilogue. This new information filters all the plans that you had, the career, the future, the people you love, all that. All of a sudden it all appears provisional. And when all is temporary, all is not worth doing.
I have written honestly about those first days after my cancer diagnosis and how close I came to letting that darkness win. Reading it back now, I barely recognize the person in that story. Not because the pain went away, but because something changed in how I carried it.
I spent weeks in that fog. Not the Imatinib fog. The hopeless fog.
I was not afraid of pain. I feared uselessness. What will be the point of going through the pain when the result has already been written?
I was keeping that question in my heart.
Then one ordinary morning I happened to see that I was still breathing. Still here. And this occurred to me: had I really been at the end, things would have looked still worse. I was still functional. Still capable. There still was a mind that could think, argue, learn and help people.
It was not that thought that blurred the pain. It simply provided me with a place to vent it.
What Inner Peace With Chronic Myeloid Leukemia Actually Looks Like
Peace does not imply the lack of pain. That was longer than I could comprehend.
In the beginning of the first year, I was in pursuit of comfort. Fewer symptoms, better sleep, so many painkillers. Each morning it was a bad morning, and that is a failure. I was counting my days by some other model of health that I no longer possessed.
The change was achieved when I stopped attempting to return to the person I was prior to the diagnosis and began establishing a relationship with the person I was now.
What speech of a therapy. Let me make it concrete.
I cannot walk fast. My senior partner in the firm takes a morning stroll to court. He knows my situation. I no longer felt embarrassed about the distance between us, but I continued to use that slow pace as a means to start the day psychologically. The thing I looked at as a constraint turned into getting used to.
I am not able to work with high intensity in the long-term. Therefore I plan my days in a different way. I rest without guilt. Tomorrow I will plan on days that today is a write-off.
I no longer had to justify my bad days to individuals who lacked a reference point to comprehend. Not out of bitterness, out of self-preservation. When your body is combating a chronic condition, this means that you are limited in your energy. All the unwarranted explanations are pure energy that might be used to do other things.
This is not giving up. This is not dreaming your life, but rather living it around what you are actually able to do.
The Role of Purpose When Your Body Fails You
When teachers explained things poorly in university, I would make elaborate notes. I exchanged them with classmates without expecting any favor. Seeing other people pass their exams and do what I had done gave me a quality that is difficult to define. Not pride exactly. More so evidence that my life was not in vain.
That sentiment was the bone of Legalsgram.
So I started translating it. Plain words. Real cases. Practical answers.
There is that work on the days when Chronic Myeloid Leukemia wins and I will not be able to get out of the bed. It is even continuing to assist someone in determining his rights. This permanence is something that is significant to me, which I am not able to describe fully. It is evidence that I existed, that I did not spend the time without purpose.
Find your version of this. It does not need to be open and broad. It just has to be real. The days that pain speaks loudest, purpose is the only thing that speaks back.
The Surprising Thing About Accepting Pain
I struggled months to overcome the pain by all possible means. Stronger pills. Different timing. Everything that can cause a bad episode should be avoided.
The fighting made it worse.
I do not say this in a mystical sense. It actually has some physiology. Anxiety tightens muscles. Stress increases levels of inflammation. When you are always in a state of alert in your nervous system, pain is increased.
If you want the unfiltered version of what Chronic Myeloid Leukemia treatment side effects actually feel like day to day, I have covered that in detail elsewhere. What I want to add here is the part that took longer to learn: the fear of the side effects was sometimes worse than the side effects themselves.
Something different happened when I quit bracing and began to accept that some days will not be good. Not dramatically. Slowly. Misery did not go but some of its hold on my spirits was diminished. I ceased to associate a bad day of pain with a bad life.
I continue to take the medication when I require it. I do not encourage being subjected to things which are unnecessary. However, there is the difference between the management of pain and fear of it controlling one.
The fear itself was costing me even more than the pain.
If You Were Just Diagnosed
You will be tempted to get an ending with a cure. I understand that. This is not that story.
The thing I can tell you is that Chronic Myeloid Leukemia during this period of treatment in the modern era is manageable to most patients. Life expectancy is really higher than it was two decades ago. The successors of Imatinib have altered the meaning of this diagnosis.
You are going to get used to the drug. You think your body can be more adaptable than it is.
The adaptation is mental the harder. Allow yourself to mourn the changed. But do not allow sadness to be a constant epistle.
Discover something outside your sickness that is your own. A skill. A relationship. An issue that you are in a good position to address. Build around that. Allow it to develop to a point at which it becomes more of a part of your life than the diagnosis.
That is the way inner peace with Chronic Myeloid Leukemia should look like. Not calm. Not painless. Only a life that has some significance in it that the un-good bits do not need to take everything over.
Written by a practicing attorney with Chronic Myeloid Leukemia since February 2021. The given experiences are personal and do not constitute medical advice. You should seek the advice of a qualified hematologist in case you have some questions relating to the CML treatment or management.
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