I'm Tinu. My name means Love.

…Lymphoma.

Tinu

Lymphoma’s actually not an ugly word. Might even be described as pleasant if one had no idea what it was. It’s certainly less terrifying than what it is.

Cancer.

You know the odds are at least one in three that we’ll get cancer before we die. So with those stats, why does it seem so unnatural to be the person who has it?

The diagnosis was a week ago Thursday, (at least it was when I first started writing this) on the 21st of January 2016. Happy New Year!

I wasn’t that upset though. I’m still not. This had been a long time coming. Nothing like three months of blood tests, scans, doctor’s visits and Googling like crazy to get you used to an idea.

How did I get to cancer? The Backstory

Starting about a year ago, I started waking up at night covered in sweat, once a month most of the time, occasionally once a week. I was north of 40 so I figured it was early onset menopause or something. I thought nothing of it, except that it was strange that it didn’t start like a burning in my chest as it had been described to me.

I thought nothing of it, that is, until the fatigue set it.

But it came on slowly, around the same time as a major life change that I wasn’t expecting, that brought a lot of extra activity. Moderate fatigue is common for someone with a chronic pain condition.

So even though this fatigue was unusual, and it felt the life was actually draining out of my body, the sensation of being very tired seemed par for the course for everything I’d been through that year.

Once it got to the point that I couldn’t take on new clients, and could barely get out of bed for anything not work-related, I figured I was probably depressed.

After six weeks of trying, I yielded to being in bed most of the day. I spent weeks attempting to work from bed all the time, instead of every few days as the chronic pain previously would demand.

The situation was getting worse, and control was slipping away from me. The next idea was to take myself out of the equation as much as possible, and outsource anything that didn’t impact the service to my clients, or that would give them a better experience than I could alone.

Prior to my online career, I’d had trouble staying in a job more than a year unless I was promoted. I bored too easily and at the time, had tech skills that weren’t being taught in schools yet. This had me thinking maybe it was time to change careers – had this boredom followed me to my small business?

Perhaps I wasn’t handling this life change well.

So I got some therapy, I’m no stranger to it.

Sometimes talking to someone who doesn’t have a stake in the outcome of your life helps you figure out other strategies for dealing with a crisis. Or uncover deeply embedded fears that rot and fester until you say them out loud and realize how silly and tiny they are.

Again I got better – that is to say, happier, and more generally content.

But even as my mood lifted, the fatigue did not.

Less Income, More Outcome

By this time, I’d had to let my health insurance lapse. With my new expenses and sharp drop in income I couldn’t afford it.

There were some state programs I could take advantage of, and thanks to Obamacare, couldn’t be dropped from due to the pre-existing condition of spinal degenerative disorder and mild neuralgia (which I used to pay cash to treat anyway.)

Once I got affordable coverage, I lollygagged a while, until I realized the program I was on required me to make a doctor’s appointment before a certain time limit was up. I also had a set period of time before I could change my mind about the coverage – how would I know if I liked the coverage if I didn’t use it?

Great Doctors Save Your Life. Literally

Reluctantly I chose a primary care physician.

Three things went into my choice of doctors.

First, I preferred a woman. For reasons I’ll get into another day if you truly care.

Second, I wanted a doctor who had either practiced or been taught outside of the United States at some time, particularly if they’d studied/practices in Asia, South America or Africa.

In my experience, doctors who are exposed to conditions and circumstances out of the States are richer for the experience.

Last, I wanted someone who I could get to on public transportation if absolutely necessary. I don’t drive yet partly due to the nerve issue I spoke of before.

I knew I had chosen correctly when Dr. Polem asked me if I had questions before I could trap her in the office with me. (When I sensed a doctor wasn’t listening to me, I developed the strategy of getting between them and the door before the consultation was over.)

She looked me in the eye and I felt like she truly saw me. She was very thorough with every issue I brought to her attention, and she noticed things about me that needed a second look.

For example, the swollen lymph nodes in my neck. Before she even examined me, she could tell from half way across the room- they were that enlarged. She ordered blood tests around Thanksgiving.

And more tests. Then we repeated the tests.

Another thing I have to give her credit for – when I asked her why, she could have said “I think you have Lymphoma or possibly Leukemia but I can’t diagnose you.”

Instead she said “you have elevated white blood count and lymphocytes. Along with the enlarged lymph nodes, I want you to go see this colleague of mine who’s a hematologist.” She also told me that she had her ideas about what it could be, but that she didn’t want to presuppose.

The long and short of it is that her insistence and prodding that I quickly see her colleague– without panicking– gave me just enough of a prod to get to the hematologist’s office as soon as I could after the Christmas and New Year holidays. It also kept me from putting the appointment off out of fear.

Of course, consciously I wouldn’t do this. But if I was afraid, no one in my family knew yet, so I could have convinced myself that it wasn’t that big of a deal.

I went to the hematologist’s office, who I had no idea was male or female. From what I’d heard, this doctor was one of the best in the area, at least from what patients said. The doctor I was scheduled to see wasn’t available, but after an unusually long wait I was able to see her partner.

Dr. Wang is both a hematologist and oncologist in Greenbelt, MD, just a few blocks from Dr. Polem. She is of course an MD, but also a PhD. Now, of course you want to have a brilliant doctor who takes extra precautions and looks deeply into your case.

Having been to doctors most of my life, it’s been my experience that the better an American doctor is, the less they connect with you as a person. Perhaps that’s isolated to pain management, or the fact that most of the pain management doctors I see are used to working with athletes or spinal cord injuries.

But an Dr. Wang? She:

Every time I go to see her I have at least a one hour wait. But it’s so worth it. She’s spent two hours with me if I needed it. When I took my mother for my specific diagnosis, she stopped to ask my mother if she was okay from getting the news.

Dr. Wang noticed things I never even thought to ask about, from observing me, and I guess from her experience has a doctor. And her office has resources for people like me that shall we say, need extra looking-after and/or insurance paperwork and approvals.

Why’d I Even Write this?

Since my first blood test before Thanksgiving, I have typed in my blood test results, symptoms and questions into Google every single day. When I couldn’t sleep I’d stay up poring over pages about what diseases I could have. And thank goodness for the web, it’s a wealth of information.

I knew which type of cancer I was likely to have about two months before the doctors verified it. I also knew we had time to take extra precautions if I was right.

The one thing I couldn’t find for the majority of diseases I could have, was an on-going first account experience of what it was like, and the whole journey of what people who had Lyphoma went through.

For Chronic Lymphocytic Leukemia (CLL- which despite its name is considered a lymphoma), I could not find anyone writing blog posts about their experiences from beginning to end. A couple of videos but… I can’t skim a video and get to just the question I have.

So, since I know that only about 100 die-hard people read these posts, I feel like this is a safe space for me to record what is happening, but also accessible to the world via Google. Maybe someone else going through this journey will be able to easily find resources through their journey here. Maybe I can even be one.

As much I can during this journey, I’ll record what life is like living with CLL, as well as with spinal degenerative disorder and nerve pain, as I continue to write about the rest of my life. There of course will be times, like during chemo, when I might not be able to record my thoughts in a blog post, in which case I’ll get my sister to help me upload audio files.

At all other times though, as I continue to relearn- I need to write – that will help me. Perhaps doing this “out loud” so to speak, will also help someone else.

A few CLL resources

The internet isn’t completely void of resources for those diagnosed with CLL  and/or CLL survivors. I am yet to find blog posts, but people are gathering in forums to tell their stories. There are also a few sites about living with CLL and this neat kind of audio guide to the basics of CLL.

Which is very handy if you’re fatigued, which is one of the symptoms of CLL’s progression from the “watch and wait” stage to the “you need treatment” stages.

Few more of my favorites:

Next, I’ll either talk about the actual experience of finding out I had lymphoma then some ideas I’ve been musing on from the oddly comforting experience of telling people you like and love that you have cancer.

 

Exit mobile version