Wednesday, June 24, 2015

going through radiation, or: emotions vs. logic, ghosts, that parallel world, and a hammock

This is where I am right now:

- 4 weeks ago, I had my last chemotherapy session
- 2 weeks ago, my chemo port was removed in an ambulant operation
- 9 days ago, my radiation therapy started
- altogether, it's about 250 days of treatment so far

And here's a reflection on all that, first the rational part, and then the emotional part (basically, the thoughts and emotions I am going through every other day in some way or another, to get a grasp of all those invisible things).

From a rational point of view... 
...the finishing line is finally starting to come closer: at the end of July, the treatments are complete. Well, at least the direct treatments. There still will be medication afterwards. That's the way you deal with cancer: you use all the options you have, one after another, to keep it from returning. Because the troubling fact is: even when you are lucky and have a nice, well-defined tumor that can be completely removed, there is still a 50% chance that there are single tumor cells that have spread already.

Up until the 80s, the standard treatment for women diagnosed with breast cancer was a mastectomy (removal of the entire breast), in the hope to "catch it all". Only that cancer can't be wiped out that easily. So even after a mastectomy, there is the ongoing risk that it will return, or rather: that some single cancer cells remain somewhere and start to grow again, because that is what they can best.

One of the risk-areas for breast tumors is the lung. Hadn't know that, even when they did the standard x-ray after the initial breast cancer diagnosis. The full scale of what it meant that my x-ray doc said "your lung looks good" - that's something I only realized later, when I started to understand more about cancer cells, and the therapy.

(my daily radiation date leads to this place: the radiation centre is in the basement of the hospital.)

So that's what chemotherapy does: it catches those potential cancer cells that spread to another, unknown point of you body. It's also the reason why it is given as infusion: to circle the entire system.

In contrast to that, radiation is focused right on the nearby tissue, but with the same plan: to catch potential cancer cells that might have spread from the initial tumor. And like chemo, it also damages the healthy cells of your body, but it damages the cancer cells more severly, as your healthy cells have the ability to recover.

Here's the matter-of-fact explanation of it:
"Radiation therapy is commonly applied to the cancerous tumor because of its ability to control cell growth. Ionizing radiation works by damaging the DNA of cancerous tissue leading to cellular death. .. Radiation therapy is in itself painless. Most side effects are predictable and expected, side effects are usually limited to the area of the patient's body that is under treatment. The main side effects reported are fatigue and skin irritation, like a mild to moderate sun burn. The fatigue often sets in during the middle of a course of treatment and can last for weeks after treatment ends. The irritated skin will heal, but may not be as elastic as it was before."
Altogether, radiation is easier than chemotherapy, and much shorter, too. It's daily, though, and it will probably be like developing a sun-burn, and then still going into the sun on a daily basis, and watch the effects while counting down sessions.

On the other hand, it's "just" skin in a defined area. And after the treatment, the skin will heal again, and the burn will fade.

Side effects for me will probably start this or next week - yesterday, the nurses asked for the first time how I am. They probably already noticed something before I did, as in the evening, for the first time, the skin looked a bit reddened, yet that faded during the night.  

And I notice that I need a bit more sleep. But otherwise, I feel okay, and am still able to recover from chemo.

I looked for a video that gives an idea of the treatment, here's one. The radiation machine is called  "LINAC" (linear accelerator), and the one they have in hospital is almost identical to the one in the video.

The emotional side of it

That was the rational side. The difficulty is that most of all those things are not visible, and beyond our ability to notice and feel them. Both chemotherapy and radiation happen on a cellular level - all you direclty feel are the side-effects. So from impression, it's the treatments that make you sick - the cancer itself didn't feel like it caused any harm, it was just there, a little lump of tissue. It's like a dark thing underneath the skin that was there, lingering, and after the operation it was gone - but the ghost of it is still hovering, and with it all the havoc it can cause.

It's such a strange abstract illness. And at the same time, it's not something that comes from the outside, like a virus or bacteria, but it is own body cells that turn disfunctional, without direct cause. And of course, this makes you wonder how it happened. Why me? When was the turning point for those cells?

Going through all those treatments also continually takes me into this parallel world, where most people are either ill, or are doctors and nurses. Where meeting people who happen to be beyond cure is happening on a weekly basis. All who are there are dealing with health obstacles, either with their own, or with those of the ones they try to cure. And yet, this world isn't all sad or painful. There is laughter and silliness, and boredom and eagerness, and together with the pain, there is hope.

In some ways, it is like being on a long journey, meeting others who are on their own journey, and sharing the experiences. It's not lost time, not at all. It's probably one of the most intense times in my life, and - in some ways - one of the most important, as it puts everything in a larger perspective, and shifts the focus to the major life questions.


This weekend I visited the "Buddha" park again, and it was good to be there, in this place of quiet peacefulness. And we went to a birthday party on Saturday evening - it was the first real party I went to since ages. It was good, to be there, being part of the "normal" world again, with others. Especially as radiation is a rather lonely treatment, compared to chemo: all my chemo sessions were group sessions, a time of meeting and talking with the others, and of going through it together. While with radiation, you are mostly alone, you go there, wait for some minutes, are called, get prepared, and during radiation everyone else leaves the room - so you are alone with that machine. Which gives all a strange film-like feeling. Altogether, it takes about 20-30 minutes from arriving at the radiation centre to leaving.  Here's the note I wrote after one of the first sessions:

"That sci-fi-like moment when you are spotted by green light pointers in a radiation-tube-machine-thingie, and the doc and nurse leaves the room, and you look up to a sky of stars and then the machine starts to move with a low hum and the lights turn to green for "Action".

The suggestion from the radiation team is to rest after the radiation, and take things easy. Which brought back the idea I once had: to put up a hammock in our garden. Only that there are no trees... but that problem now got solved, I looked for hammocks that has a frame - and it works really well. So this is me after radiation: 

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chris said...

That hammock looks like a great idea, and gardens are super places for healing. This has been such a long journey for you Doro; I'm so glad you're nearing the end of it with the therapy finishing soon. Thinking of you!

Guilie Castillo said...

Powerful post, Dorothee. Your experience, both physical and emotional, came through loud and vibrantly, almost painfully, clear. I'm glad you're almost done with treatments; you can begin to heal. But yes, I get how intense this has been, and how it's changed you, or your perspective (or both). I'll look forward to reading how life gets back on track for you--or what other tracks you find :)
Guilie @ Quiet Laughter

Beth said...

Thank you, Dorothee, for describing your experiences (both inner and outer) so clearly and honestly. It helps.