Author: Dennis

My mother is in a lot of pain, but she’s a taaie tante so she doesn’t complain much. Sometimes it’s so bad she can’t sit still, she cries or rocks back and forth hoping to find some eleviation. Over the last ten years her body has been getting rickitier and rickitier, her joints, mostly. The cancer is taking a lot out of her, and she’s aging very quickly, and that’s certainly not helping her problems. She got stereotactical radiology on her lung, which also caused some tears in the muscles of her shoulder as a side-effect and by now the pain is unbearable.

Yesterday, she and I went to the hospital together to talk about the options for pain treatment. My mother says she’s feeling fine, and the cancer doesn’t bother her, but her shoulder is giving her so much pain that she’s eyeing the euthanasia-papers more and more lately. She says that all the medication she’s taking – and it’s a lot – is to get rid of the pain in her shoulder, and it’s not helping anything. The side-effects of the medication are also pretty severe, so if she could find an alternative, get rid of the pain, she’d be so much better off.

There are three options; 1) running an electric current through the two nerve clusters that are giving the most problems, coupled with a shot of steroids to get rid of any possible infections. This will result in a numb arm but usable arm. Problems are that she won’t be able to feel pain, so if she hurts herself she might not notice. 2) Shutting down neural pathways so that her entire arm is not just numb, but also paralysed. My mother doesn’t consider this an option. She’d rather live with the pain, as one of the things she cites on her euthanasia-registration as quality of life is the ability to take care of her own body. It’s a deal-breaker. 3) The same as option number 1, only this time instead of doing it to a nerve cluster, they do it straight on her spine. It’s a very intense operation, during which she has to remain awake in order to give directions to the operating doctor to say whether or not the pain is gone.

We’re going with option number 1 first. Hopefully that’ll do the trick, and even if it only takes away half of the pain my mother experiences at times, it’s going to be such a relief. It’s going to be a relief for everyone; my sister, my brother, anyone who helps her out, because you just want to tear your hair out of your head in frustration because you want to take the pain from her, if only for a little while. It reminds me, in a very geeky way, of the priest spell Shield Other in D&D, where you’re able to half the damage of the one you shield. I would gladly take my mother’s pain if it would give her a moment of respite, even though she would never let me do it, of course.

During the interview with the doctor he asked me if I could add any more information to my mother’s story. I told him the entire story, in chronological order, with all the elements that I thought were important. I told him that she was technically untreatable and that her life-expectancy wasn’t so long by the look of things, and that while she is riding out the last of her days (weeks? months?) she wanted to concentrate on the things that matter to her the most, the people that she’d leave behind, without the encumbrance of that pain, because it would pollute everything. He understood. My mother, suddenly confronted with the reality of the situation, broke down. The second time that happened since this all began. Sorry, mamma.

We walked home together. The air was cold and crisp and the sun was warm, and my mother said she had the energy, and so we walked, meanwhile talking about the things that were on her mind. She talked alot about the relationships she has had with men, her father, my father, my step-father, etc. She told me about the problems she’d had, and the reasons for them, and it struck me that she was so incredibly self-aware, and so open about her flaws and her mistakes, and I felt privileged to listen. God, even though my foot hurt like hell (Kung Fu injury), I didn’t want that walk home to end. I haven’t connected with my mother like that in years, and it was all so comfortable and…fluid.

My mother’s options have run out, and she is considered untreatable, which is devastating to accept. Luckily, there’s an experimental chemo-treatment that she has been offered that has had mixed results among the 20 people that have partaken so far (in Europe). Yesterday we went to talk to the doctor in charge of that research at the VU hospital in Amsterdam. We came prepared with a bunch of questions, which she patiently answered. She also gathered information about my mother, and said that she could start the treatment in a week or two if she was found to be physically capable. (There was no reason to suspect otherwise.) So she has one last shot at getting rid of the cancer in her liver.

We had a second appointment with her radiology doctor, who had treated her lung with stereotactical radiology. He was a really nice and polite doctor, and it was obvious that my mother was very fond of him. Regardless, he had some bad news regarding the latest scans. While some strange things were found on her lung, where the original tumor had been, he suspected it was scar tissue from the radiology and nothing to worry about. He was far more concerned with her head. Last week, my mother was scheduled to have a check-up on her head, to see how her brain was faring after they had removed a fist-sized tumor from there last year. Sadly, she had six different, small tumors scattered all throughout her head, and it had been decided in the short time between the first appointment and the second appointment we had that day, that this would have to be treated first before she’d be eligible for the experimental treatment.

It was decided that she’d get two sessions of radiology on her head. They can’t do the stereotactical radiology, because the limit to that option is three separate tumors, so they’re going for the full blast option. This means that even though my mother has retained her hair throughout all the treatments she’s had over the last year-and-a-half (which is pretty miraculous), it’s almost certain she’s going to lose it anyway. Whatever, right?

It was a pretty big blow to all of us, though my mother seems to be least of all affected by it. She claims she had kind of felt like things weren’t entirely in order, and had prepared for it. I spent the rest of the day with my mother, brother and sister, and random people who came to visit. At a certain point my mother said she was so happy that all three of her children were together with her. I’m going to have to spend more time with her, it seems like there’s no that much time left. The day was also spent on the phone, as my sister always sends a status update to all people interested, which meant that a good twenty phone-calls and an equal number of text-msgs came in. It surprised me how many people got so incredibly emotional, and how well my mother was able to handle them, calm them down and cheer them up. My mother is amazing. She’s the one dying, and still she’s Mother Theresa to the world. I swear, if she doesn’t get a nice spot in the afterlife, I don’t know who will.

Depending on how she feels after the radiology on her head and on how she’s doing physically, she’s going to do the experimental therapy. If she can’t, or no longer wants to (we did make all the euthanasia-paperwork in order last night), we’ll buy her a plane ticket to Italy so that she can spend some time in the sun there. She’s always loved Italy and we have friends there that she loves dearly, and one of them she hasn’t seen since all of this began. If she has to die, she’ll die with a cool tan.