About the cancer

Summary

In June 2014 I was diagnosed with metastatic breast cancer, spread to the lymph nodes, bone marrow and skeleton. The cancer is estrogen receptive, making it the easiest of three types of breast cancer to treat, though the metastases mean that I will never be free from cancer. I didn’t find it in time, in part because I didn’t do my monthly checks and didn’t know everything there was to check on, and in part because it is lobular, making it very hard to discover, even on a mammogram. I’m now doing ten rounds of chemo, and hoping for a miracle.

The start of it all

It’s hard for me to know exactly where to start, as I found out about the cancer so very late. For convenience sake, I’ll start at the beginning of 2014, when on a work trip after a meetup in Berlin, which my work had organised, I slipped on a patch of ice, tore a ligament, and dislocated my kneecap. It took me some time to recover, I was limping around with a really swollen knee, quite painful, but not in any way life threatening. As I was recovering, I realised that while I was regaining mobility and could start to use my leg more and more, I was not able to walk long distances without considerate pain. It seemed to me this bit did not improve as the rest did, though I mainly put it off as something that simply took longer to heal.

At the very end of winter, around March, I was constantly getting ill. No sooner would I recover from one cold, or flu or pneumonia, than another would hit me. I kept going to the doctors office, but was prescribed some coughing medicine, or some asthma medications (though I have never suffered from asthma in my llfe). At the worst nights, I would sit in my kitchen, sleep or lying down was unthinkable, cough my lungs out, and write down exactly what symptoms I was having, and what medicines I had taken, in case I would collapse and someone would find me the next day. My back was hurting terribly, which I thought was understandable by how badly I slept, only it really would not go away, and it was hurting more than any neck pain I’d ever had before. On top of that, when I looked in the mirror, it seemed to me that my neck was swollen, thicker than usual, and I could feel bumps just under my jaw. My throat hurt constantly. Some nights I seriously considered calling an ambulance, wondering exactly how sick you were supposed to be to do that. I would try every home remedy there was, to no avail. And I would vow to myself that tomorrow, tomorrow I would find a doctor who’d listen and try to find out what was going on. Because I really didn’t have a clue, except that it couldn’t be good.

Around the same time, in the shower, I noticed that my right breast was looking very different from the other. It was larger, looked swollen, and my nipple had popped in, something it had never done before. I say ‘around the same time’, because I think the first thing I did when I discovered it was to completely blank it out. I did so for about a month, until one day I went shopping for a new bra (you know the way we do when we don’t have a drawer full of wonderful underwear anymore - more of the “I need a new white bra kind of thing”), only I seemed to be in need of two different cup sizes. I couldn’t ignore it any longer, and since I had completely lost faith in my local doctor’s office, I phoned a private one to book an appointment for a breast checkup. The waiting list was long, but I didn’t think that mattered.

In the meantime, I began noticing some weird and worrying things. I have always had a low blood preassure, so low that most nurses seem to think their equipment is broken, so I’m used to getting light-headed if I stand up too fast, but this was something new. First, I realised that my fitness level was at an all time low. Walking down to the train station would leave me exhausted. I blamed myself for not working out as I should have, but figured it had to do with the bad knee and how I wasn’t able to get around like before. I started noticing that simply getting up from a seat would leave me light-headed and dizzy, and I would hear my blood pumping in my ears. At night I was so tired I would fall asleep in the sofa after work, and I started to suspect I was anemic. I didn’t connect this to my swollen breast in any way, and so I booked one last appointment at my normal doctor’s office to yet again list my symptoms and try to find an explanation. At this point, I’d also found a lump on the back of my neck, just a small one, but quite definitely a lump.

Finding out

As I sat down with this new doctor, I listed all of these things, and she examined the lump on my neck, and my breast. I asked her, “How many of these things would be explained if the breast is cancerous?” and she answered calmly “All of them”. I left the doctor’s office and went to work, distracted as I was. I was worried, but by that time, I had been worried for a long time, so it seemed quite natural to me.

The next day I left the blood samples the doctor had ordered, though she told me they would take a few weeks to process, so I’d not hear anything for a while. By lunch time, another doctor called me, and told me to go to the emergency to get a blood transfusion. My hb, or blood count was 70, compared to the average of 120-150. I was anemic, just as I had suspected, but that would only be the beginning of it.

At the hospital

At the emergency room they admitted me and gave me the papers from the doctor’s office, they had faxed them as they were not using the same systems. Naturally I read them. “High suspicion of malignity” it said, and I think for the first time, I realised that I really did have cancer. I read the result from the blood test, and not only was I seriously anemic, my ESR (sedimentation rate) was almost 70, way too high.

It took from early afternoon until late at night before I got the blood, and as I lay in the four bed room in the middle of the night, I cried as I have never cried before. The next day, I met a surgeon who checked my breast, confirmed that it seemed malign, and ordered some biopsies on my swollen lymph nodes. By afternoon the tests had come back, to show that they were malign too. I realised at this point that this meant cancer stage III. But still, it would get worse.

I was released from hospital after one horrible night, after they did a CT to check if my lungs were affected. As they were not, I was free to go, and given a few new appointments, like a bone marrow biopsy and something more, I forget what it was. After about a week I had a new appointment, this time with an oncologist, who told me they had found cancer cells in my bone marrow and in my skeleton (during the CT I did while I was in hospital). This meant that the cancer was stage IV, the worst there is. There is no way to be cured, no known way of extending my life to a normal length. The only thing left for me is to hope for a miracle.

Treatment plan

As the tumour had spread and the cancer had advanced, surgery isn’t on the list for me. I will do ten rounds of chemotherapy, hoping against hope that this will get rid of as much of the cancer as possible - hopefully all of it. At one point it will come back though. The reason for the exceptional long treatment (usually chemo will be three or six rounds when you have breast cancer) is that it has metastasised to the skeleton, where the cells grow very slowly. By prolonging the chemo, the doctor’s hope to target as many of the slow growing cancer cells there as possible.

The reason I was so anemic was that the cancer had spread to my bone marrow. Once there, it makes it very hard for the body to produce blood. At my fourth treatment, we started seeing an improvement in my blood count, which means that I now have fewer cancer cells in my bone marrow, and can produce blood a bit better now.

Chemo

Ten rounds of chemo is what the oncologist prescribed, and as I’m writing this, I’ve done four. Chemo is really, really hard on the body. I’ve lost all hair on my head and most of my eyebrows and eyelashes. Three of my nails have darkened and one is threatening to come off completely. I have developed what appears to be myopathy, and a near constant ache in my joints, most noticeably my knees and my right hand, but also in my feet and my lower back. I have chemo-brain, which makes making decisions difficult, and makes me soppy and emotional, as well as makes it hard for me to always follow in a conversation. Despite these things, I think my body is doing really well in taking all the toxins we’re pouring into it!

The tumour in my breast got visibly smaller by the end of the first treatment, and the lumps on my neck disappeared. At my fourth round, we noticed that my blood count had improved, meaning most likely that the cancer in the bone marrow is diminishing.

Remaining hopeful

It’s not much of a chance I’ve got, but I’m clinging to it nonetheless. About 2% of women with metastatic breast cancer go into complete remission, and manage to stay there for a number of years. That’s what I hope for. I believe, truly that we will see a cure for even metastatic cancer in the next ten years, and if I can only manage to stay alive that long, hopefully I can benefit from it.