The prognosis so far hasn't changed - I might get a ruptured intestine or a ruptured stomach at any moment, at which point we might be talking about how many hours I have left. If that happens I will likely be in excruciating pain, have to call in relatives hoping they will make it back to see me one last time, knowing that they might only be able to make it to the funeral or later and not to talk to me face to face.
The other, slightly more likely scenario, is a slowish progression towards the end. There is a chance of a massive infection or growth, a hardening of the disease, or a type of starvation in spite of the TPN. The disease itself is making me tired as well, so It's hard to tell how much of the exhaustion is coming from what. As things stand there is a layer of cancer surrounding my small intestine, combined with a complete intestinal blockage it is offering some kind of protection as the cancer is blocking the potential infection from coming out of the intestine. At the same time it might be presenting the weakest spot to the outside of the intestine so that could be a good thing or a bad thing. Either way, there is no good ending to this.
I am tired a lot, Not getting to eat , just drinking small sips of water and Jello. I am worried about the end. I am worried about being anxious and feeling scared. I am taking some medication for anxiety and discussing with my doctor and Noemi how much more medication I will be taking as things will get worse.
This is also horrible for my family. My parents, my wife, my children, they want to take care of me but at the same time they are worried so much about losing me. It's so hard to go through it through their eyes. I can't imagine what it's like watching your spouse, parent, child slowly die in front of you, be constantly in and out of pain, watching them struggle to manage and to put on 'a face', not knowing which day is theirs and yours together last. Noemi will have to make a decision about my medication and level of comfort towards the end. I had a conversation about that with her yesterday. She seems very mature about it - she wants to respect my wishes which currently are to in fact feel comfortable enough to not feel too anxious about what is going on while it is happening, which the palliative ward has good options for. At the same time she is very worried for me. Yesterday for example was the last day of elementary school for Theo and Adilyah. I left early to see the last school assembly. Partly because I was out earlier than usual I didn’t feel so well, my belly felt a bit more distended. I shared that with Noemi and she soon called my doctor who then asked me not drink anything until this morning so that she could examine me (I’m on the otherwise ‘drink as you tolerate it’ regiment), which speaks to Noemi's worry for me and what to me feels like anxiety about my health, which is very understandable.
The day before yesterday the children and Noemi came over to the hospital. We played some card games, chatted, goofed off. It was really nice. We took some nice photos of ourselves together. At the end of the day I looked at the photos and couldn't say if they were one last episode of a good day, or the last time we would have this kind of warm moment together. Everything carries with it now this aura of a potential last, though that can be rough, it sometimes helps when it's obviously a last moment. Take going to Theo and Adilyah's last day of elementary school, and my last school assembly ever. That last statement might sounds defeatist, but I find that that attitude can also help - I know that I won't go to another school assembly, which means I can enjoy the last one I do go to for what it is. Even though I was in pain and discomfort throughout part of it, I also got to see and enjoy Theo and Adilyah's last day of school. And experiencing it partly through their dad's eyes was obviously very difficult for them - Adilyah started crying, Theo was emotional in a very Theo way - sharing what he was going through, talking about wanting to put my tie on him and realizing it was still too big. These experiences are very real, and very meaningful to them. They will be remembered as both sad 'last of' memories but also as pleasant moments that they got to share and tell their dad about it in the last few days/couple of weeks of his life. That has meaning, and it has a lot of meaning to me.
My parents (and Noemi) want to take care of me. I totally understand that - isn't that what you would want for your sick child? but they are limited to what they can do, and they are struggling with that. They can't make the pain go away, they can't make the emotional wrench in my gut disappear, they can't make the fear pass. So they do what they can do - comfort, rub my back, tell me continuously they love me and care for me. We all know what is behind it - an inability to foster change through will alone. Again, I can't imagine what it would be like to go through something like that with my own child/spouse, but that is the most they can give me. At the same time they appear to be trying to hide these feelings of inability to make changes from me. It's as if they pretend I that if I don't see how difficult it is for them not to accept what they can't change then I won't feel that possible crushing inability within them as well, but I do. We end up coming back to it. Over and over again. There is not much to be done, acceptance is a bitch, whether we accept that or not.
And yet struggling with acceptance is something we all have to deal with. Yes, I am afraid, we all are and all will be. Yes, I am very anxious, we all are and all will be more. At the same time I am working on my own level of a form of acceptance. I will close my eyes at one point and not open them. Barring any supernatural existence I will be gone. I will leave what I can leave for them behind -be it financial, organizational, or in a 'last letter' form, I will leave it and have to hope that they will manage with it. I will have no control on whether or not and to what degree they will actually manage, because I will be no longer more there for them, no longer on the other end of the phone or text, giving my two cents, trying to fix things or give advice. I can go back and forth on the merits of it but one thing is for sure - it will be what it will be. Again, prayer and supernatural belief aside.
And so I am back to waiting for my last moments, for what they are worth, and enjoying the last moments I get with my family and friends for all that they are worth, and hoping that I will be able to make the best of them, because that is what I have, and that is what I get to live with, whether I accept that or not.
As usual and always - I love you all, and I hope I will have more to add later going forward.
With you,
Amir
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| Last hugs after card night at hospital |
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| Adilyah playing in the last assembly. Sitting middle in torquoise shirt |
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| Theo getting graduation certificate |
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