This is the number one question I get. Which is funny because this is the number one question I have.
Which may be, as a patient, an unreasonable question. Or at least an unreasonable expectation. In my head somewhere, is this movie of a person being told they have cancer and either being told what day they should start treatment or being wheeled off on a gurney immediately. (That last part is likely too much Greys Anatomy.)
I first realized something was wrong with me this fall. Not to say I didn’t have some strange symptoms before that. However it was the fall when I really started to notice that there was an issue. Because of the two chronic pain issues I already have had since 1992 and 2007 respectively, I am used to bouts of fatigue.
My body works so hard dealing with the pain. And then I worked it so hard moving, at the time, two businesses forward. After some time the creeping habits I adopted to deal with the pain and exhaustion became normal.
Limiting how much I go out. Breaks of up to two days to go out or travel. Not being able to walk long distances or stand for long period of time.
So around September, when it got to the point that I was sleeping late and napping every day, had to outsource all but one of my bigger projects, needed a chair in the kitchen to cook, and literally laid out on the couch in the evenings instead of sitting?
I figured it was all finally catching up with me, all the changes over the past year.
I changed health insurance around that time. And I had to go see the new primary care doctor. I was really only to go to get a referral to a psychiatrist because I thought it was symptoms of depression manifesting physically.
It was November by the time I finally saw the doctor. She saw my swollen lymph nodes immediately. Then there were blood test. Then the blood tests were repeated. Then it was the holidays and I put my issues out of my mind. Then it was back to the doctor for a referral to a hematologist.
This was early January. I’d been to the emergency room before my appointment with the hematologist came up because I was getting stabbing pains all over my body. It was likely the enlargement of my lymph nodes pressing against some nerves, or otherwise exacerbating my existing nerve pain problem.
When I spoke to the doctor privately, I asked him if, considering my labs and my symptoms, if he thought it could be anything else besides Lymphoma. He said no. (I mention the privacy as my Uncle, who worked at that hospital, and my sister, who was along for a separate issue, were often around. That’s how it is with Naija families- we roll deep.)
But I still held out hope and waited to see the hematologist. By this time, my mother was starting to suspect something was wrong. I told her, planning she would come to the appointment with me.
She was supposed to but a child care issue had come up. So I went by myself, knowing from what the one doctor said and months of Google research and lurking in CLL forums that it was likely I had a form of cancer. So I went alone.
I very highly recommend against this. As I’ve written before, I immediately went into some kind of shock. Luckily my doctor has a kick ass bedside manner so it wasn’t too bad. But wow was I glad to have my mother there for the next phase of getting a specific diagnosis of a particular type of Lymphoma.
And that’s my point really. That if you’re a newly diagnosed patient, there may be weeks of tests, poking and prodding before they decide how to treat you.
In a way, this is a good thing. When you have a faster moving cancer, you might be rushed through this stage. You may even be admitted to a hospital or some other type of facility.
The type of Lymphoma I have is slow moving. Some people have it for decades and never need to be treated. Like a dear friend says, I, on the other hand, am an overachiever. I have just about the most complicated version of your average slow moving CLL.
And I still had time for almost 6 weeks of tests and biospies before treatment.
In a way, at this point, I’m eager to get this show on the road. I want to get in there and fight this thing, to pummel it until it cries for mercy and fucks right off.
That is not to say I’m looking forward to chemo. My previous pain issues are likely going to make this a neon hellscape. Even the placement of my Mediport is still sore, much longer than it should be after a week if my research is correct. (Which my doctor hid in my ample bosom, by the way. Story for another day but I needn’t have freaked out so much.)
I guess you could say I’m looking forward to winning. Which I intend to do.