Life of a Chemo Patient

Its three years today. Three years ago that I got my first round of chemo.

It was my intention to use this blog to write about what happened in the months between the diagnosis and the actual start of the treatment. The stories about accumulating medical errors, an oncologist who changed the tumor classification or who forgot half of the tests he had to do. A second opinion on the tissue that came back showing it was performed accepting assumptions made in the original test (“coloring positive for CD120, according to hospital, sample not included” – I know that phrase by heart). The re-growth of the tumor with the open surgery wound on top of it. The last month spent in bed because the bulge hanging from my bottom (remember, it was originally diagnosed as a haemorrhoid) was so big that walking had become quite difficult and the pain caused by the growth and subsequent pressure on the open wound was becoming difficult to handle (I lived on 3200mg ibuprofen per day). All that I had wanted to describe in detail.

Or the fact that a friend of mine saved my existence by suggesting to take matters completely into my own hands and go for a better alternative. Which brought me to the University Hospital in Geneva on August 8. Quite drugged down with opiates, as sitting was quite a problem.
Or the meeting that evening with my doctors, showing them the series of daily pictures of the regrowing tumor, and who within less than 15 minutes had a conclusion and a story that I could totally accept, in a way that gave me confidence in these fantastic people.
Or my visit to the hospital the next morning, where I saw the oncologist turn grey when he actual saw the tumor, over 20 centimeters wide, and having all tests, 13 tubes 0f blood, PET/CT scan, bone marrow sample, performed that same morning. And the start that same afternoon of the pre-treatment with prednisolone to take the swelling out of the tumor. Ending in the first round of CHOP on the 11th of August.

But I didn’t write about all that. I did want to spend the little energy I have on creative things in the now. I decided not to linger on looking back, although without anger, to those months leading up to my final treatment. And the positive things that initially came out of it.

Despite having been cut (the surgery) and despite months of re-growth, the tumor has caused no metastases whatsoever. With this aggressive cancer a pure miracle. This cancer is known to grow in the interior of the body, very aggressively, to be discovered when it is, very often, too late. Mine was in an unfamiliar location (understatement of the century), almost entirely on the outside as if it had been pushed out by my body. Geneva had confirmed the original diagnosis made by the pathologist, B-cell plasmablastair non-Hodgkin, cd20 negative, which seems to be the more rare variety.
The cancer took leave much faster than expected; after the 3rd round of chemo it had already all but disappeared. The open surgery wound on top of the tumor had healed, despite the chemotherapy, within weeks after the start of the treatment.

Instead of writing about all that, I wrote about how I feel due to the consequences of the treatment. The cancer is still gone, all test results show that I am healthy, maybe even better than ever before in my life, but my body, and as a consequence my mind, does not function. I can still hardly walk, the neuropathic vibrations in my lower body and arms are more often than not almost unbearable. The constant state of irritation of the mucus in my mouth often makes even drinking water painful. And these hours of despair when my mind switches off again, not knowing whether it will be for just an hour or 2 days. Each time an ordeal during which I can hardly read, think, speak; I loose focus, mentally, and coordination, physically – my legs, my arms, my guts. All that with the knowledge that so far nobody seems to know how to solve this (see my previous entries to see what my thoughts on this are).

And still, I am alive. Sometimes I wonder whether that is such a lucky thing, however, small but dear moments make it worthwhile. The day friends of mine married, the day I was told that I was nominated for an important international award (which i did not receive BTW) but even less big, like the moments my head is clear and the neuropathy at a distance.

I still have goals in my life, most of them related to my work, which I consider my “child”. The last 3.5 years have shown how important it is for patients to be actively participating in their own process. If anything it is the thought “how would all those have fared who do not have my knowledge or my stubbornness” that has gone through my mind most often during all that time.

Although quite some people have disappeared out of my life since this started, I want to thank all those who stayed on and have shown me their support, each in his or her own way. It meant more to me than I often have shown.